I love this question and I think so much of what you shared in Unfit Parent helps me orient to what and how I share about it. Yes, of course, there are those moments when I just need to blow off steam with a close friend or my co-parent about something my kid is doing that is driving me crazy. But most of the time, the reason I am struggling is not because of my kid - it's because we are steeped in systems that are wildly unsupportive and do not seek to understand diverse perspectives and want to judge him (and me) instead of trying to understand what is going on. So when I share more publicly about the hard parts of parenting I try really hard to come at it from that perspective, which has actually been really helpful in reorienting my own perspective on what is going on. (I'm not terrible at parenting - I'm working really hard to parent in a very broken system.)
Wow. Thank you. And hi :) Right! I mean, you are getting at the fundamental issue here. But if we don't share the details of how hard parenting is (including our kids) are the systemic imbalances are less believable? I get if we share the details, with the framing that our kids are not the _issue_ it's less likely to be harmful?
Oof - that question about what is believable is a good one! I think some part of wanting to share these stories or experiences is the desire to be believed and the frustration of not being believed when people try to fit what my kid is doing into "typical" experiences. Sometimes that makes sharing details even harder - if I am sharing details and it's not believed that is so upsetting.
This question, and the conversation here in the comments really has me thinking a lot about how often we share details, in what way, and how that might feel to kids (and retroactively feels to us!). I also acknowledge the inclination to cope with this thing that is really hard by turning it into a story to have a laugh about - and see how very dangerous that can be. As I think about this more, I would say that where I am sharing in more detail is where I already know I will be believed and met with validation and reassurance. When I share more publicly I *try* to focus more on the experience of parenting than the details of what my kid is doing, though they are so often tangled together. Most of what is hard is not totally understanding what is going on in my kid's brain or nervous system and I have long ago learned not to invite other's speculation into that. So instead I try to focus on how hard it is not to know, the things it brings up for me, the missteps I make in trying support him, etc.
I'm obsessed with this question. So important! So tangly! It wasn't until I was well into my 20s that I started to piece together just how harmful my mom's narration of my childhood illness and disability was to me. It was the days before social media, but witnessing the way she'd talk about me in front of classrooms and congregations, again and again, erased my experience -- it was like I was a player in her story, not the author of my own experience. I don't think this is an uncommon dynamic between parents and children, but I do think it's made more complicated when the child is disabled as if folds into much larger societal patterns/harms. Before my son was born, whether he had (or would have) a disability, I was adamant that I would not do this. I would understand the two of us as separate, distinct beings. I would never tell his stories as my own. And also, added to the tangle is the tremendous value I see in representing disabled motherhood -- how do we tell these (needed!) stories powerfully (which, I think, means specifically) while honoring their stories/selves as distinct/autonomous? Now that my son is here, I understand how impossibly hard it is to do both of these things at the same time. My imperfect guide has been to 1) keep the spotlight on my experience as a mom/stay embodied in my own POV, 2) be super cautious with what stories I share/if I do share, choose each word carefully, and 3) describe the moments I do share without judgment or assumption about what any of it means to him. Every piece of writing that includes him feels like starting from scratch with a whole set of unique concerns. I'm not sure I'm doing it right. I will probably continue to adapt as I go. But I think the questions are important. I want to keep them in the forefront. Thank you for inviting us into the quandary. I am soaking up everyone else's responses💛
I have been thinking about this comment for 5 hours! I have been focused on whether kids will feel loved when they read what their parents wrote, but you bring up the important question of will they feel _real_. It's already so hard to figure out who we are, without there being a public narrative clouding our perception. But also!! the easiest answer of, just don't talk about your kids can't be the solution because like you're saying, disabled parents are so absent from conversations/images/stories, so including the details is essential. And the details feel a lot less true if they are missing kids. Thanks for diving in here with me.
Ahh, reading your description of this tension is so helpful. I agree that focusing on whether or not kids will feel loved is important when writing about them. And also yes, I think you're exactly right -- a piece of this is about feeling REAL! Like their perceptions and feelings and impressions of the world are REAL. As a disabled kid, I heard my experience narrated to me in medical spaces, in church, through my parents. How does a person learn to hear their own voice, trust their intuition, tell their own stories when there are so many loud adult voices telling "the story" with authority and confidence? And also, disabled parenting can be so hard, confusing, isolating, and complicated, and a lack of storytelling and representation only adds to that. Storytelling is one of the most powerful tools we have to process, feel understood and empowered, imagine more, know we aren't alone. What a tangle. Here we are. Thank you for making space for this conversation and bringing us right to the heart of it💛 I think this is so important.
I think about this so much. It isn't my story to tell, but it is also such a big part of my story as a mother and being able to share the challenges, especially when they not typical of most kids or families, really helps me feel less alone. I have found some parenting groups that can be a great outlet for sharing stories privately and supporting each other but I do sometimes want to write more specifically about my experiences as a parent and I know it can mean so much to know that you are not alone. But, of course, it is more important for my kids to know that I won't share details of their lives.
I write about my kid (age 7). I mostly read my blog posts out loud to both him and my partner, and although they rarely use it, they have veto power. When my kid was smaller and couldn’t consent, I mostly did the same as you and used my gut. I won’t take or post pictures of him in distress. I won’t make fun of him (should be a given, but a distressing number of parents do this). If I’m frustrated about something in parenting, I focus on my frustration and let my frustration be the humorous part. He said something recently that really stuck with me - we watch funny IG videos and he doesn’t like it when I share videos with his dad that make fun of kids (even though they make me laugh), like the one of Mike Tyson coming out in his boxing underpants and bomber jacket with the caption “my kid saying he’s ready for school.” It was a reminder to me that his feelings matter the most.
I love your GB stories! And you write about him with such evident adoration and care. But that's interesting that he feels more offended by something making fun of kids in general, vs a specific story. It's good to keep in mind. Maybe it's not the details that pose a risk, but a lack of respect?
That was my takeaway? Giving him a sense of agency over his story, by including him (although again, he's old enough now and wasn't before) and focusing more on myself. We also have a big hole in our narrative - my 15-year-old stepdaughter! She doesn't want to be written about, and I'm not her parent, so even though our family is a foursome, you'd never know by my blog.
This struck me as interesting too and totally makes sense. I can see my child seeing a video of that makes fun of kids an quickly extrapolate to how he might be made fun of in a similar way. Like a moment when you realize things are not as safe as you originally thought.
I also wrestle with this so much — to the point I’m hesitating to go into detail even here about what I’ve done right and wrong and how I hold boundaries! It’s so hard to untangle whose story it is when talking about shared experiences, particularly mother/child. And representation matters. AND — I completely agree with your take on Autism Out Loud and the huge problem of able-bodied parents talking for their disabled kids.
This whole dialogue that you have started has me entranced because I am a mother who writes about struggling to find a place in a world with no room for children who don't fit the norm. I am the only voice they can have. So, I need to take on that responsibility, knowing the risk I take in overstepping the bounderies between their personhood and mine. I am so encouraged to see that you've sparked so much concern about this issue.
I can't speak from the perspective of a parent, but I struggle quite a bit when I see parents sharing their children's most private moments online, regardless of whether disability is involved. Conversely, I know that for many parents, it's about seeking support and solidarity. I think that if you're asking these tough questions, you're already miles ahead of the parents who don't stop to consider the impact on their kids at all.
Yes, I struggle with that too. Though it can be hard to know what the line is for most private. I think sometimes sharing details can highlight a social need (inclusive schools, affordable childcare, etc) in a way broader strokes can't, but the inability of children to meaningfully consent is so complicated. Maybe another question is if the child read it as an adult would they feel more or less loved?
This is complex, as you say. My child is older now, and she has complete veto power. I send her anything before I publish it. My favorite thing is that she’s now old enough to add her own comments, which I weave in, with permission. When she was younger, I would tell her the story and ask for permission. Same for my husband. And I’ve taken things down that I felt bad about later.
These are such good questions. I have really struggled with this over the years and typically do not talk about my kids online beyond sharing that I am raising neurodivergent kids (to convey that I get this journey). I am so grateful for my clinical experience, which I also can’t share publicly, but gives me a lens to write from not as a mother. For my upcoming book, I’m not just changing names but I’m also pulling from real topics to craft fictional stories that I think will be relatable to the reader. While I, of course, am a supporter of privacy laws, I have always felt that they stop us from sharing our humanity at times.
These are such, such good questions. I fully understand why you ask them, even if I don't have the answers. I do think being able to be brutally honest with a couple of people about the exhausting labor of parenting is a godsend, though. But then I'm not a writer (outside of may day job: legal writing) so I don't have to choose how/whether to integrate that information into more permanent, "preserved" content (I'm also not on any traditional/legacy social media so no choice needed about sharing my daughter there or not). I think the choices you've made are extremely ethical, though, and it would be clear to your children that you made your choices with care and with them in mind! (I can't speak to the other book, but I did of course read yours!)
Thank you, Mary Kaitlyn! And yes, that's a good distinction. I don't think it's ever an ethical choice to vent in public about your kids, or speak unfiltered. I think details shared need to come from a distant/thoughtful/considered place. Thank goodness for friends and/or partners who can hear the unfiltered versions.
Oof, so complicated. Private FB groups of academic parents of kids with disabilities, parents of 2e kids, parents trying to implement CPS, etc, were such a help to me when I felt so isolated and alone as a mom in my particular reality, so that’s one in-between where you’re not broadcasting your child’s struggles quite so broadly but can still have some measure of honesty
Right! And that makes me think about motivation. I think when it comes to sharing publicly, unloading can't be the goal. Your motivation has to be clearer and measured. I think private groups/friendships are spaces where camaraderie can be the goal (probably?!).
We've talked about this question a lot of course between ourselves, and it's such an excellent one. So messy and so personal. I (miranda) took a class with Rachel Yoder and a lot of the other folks in it wanted to work on motherhood memoirs, and so our class conversations often ended up in the weeds with this thorny question of where our stories as parents end and and where theirs begin, who decides and how and so on. I think probably sharing about parenthood publicly involves some level of risk that my kids won't be happy with something I've said or written. I try to keep that in mind always, but I've messed up before I'm sure. I don't know! Come back on the pod and let's talk about it! (and also everyone else in the comments here, too! so much excellent food for thought).
I really struggle with how to handle talking about my kid’s health. She was diagnosed with the same condition that has disabled me. She will be 11 in a few days, so I feel more and more comfortable to defer to her comfort level with disclosing her experiences. She knows why I’m open about my experiences and has dipped her toe into advocacy, too.
But I hold most things back. I don’t share photos of her without her permission and never share photos or videos of her experiencing symptoms.
Reading the experiences of disabled adults who were disabled children greatly informs my approach. Every single person stresses the importance of privacy and self determination. And truly, as a 47-year-old woman I wouldn’t want my parents or spouse speaking publicly about my situation, needs or limits without my permission.
I’m happy we have the opportunity to have these conversations because the choices before us are complicated.
I love this. Why have I never considered how I would feel if someone wrote about me, and then adjusted accordingly? There are definitely things my husband could write that would make me feel seen and cared for, and others that would feel like a humiliation.
I love this question and I think so much of what you shared in Unfit Parent helps me orient to what and how I share about it. Yes, of course, there are those moments when I just need to blow off steam with a close friend or my co-parent about something my kid is doing that is driving me crazy. But most of the time, the reason I am struggling is not because of my kid - it's because we are steeped in systems that are wildly unsupportive and do not seek to understand diverse perspectives and want to judge him (and me) instead of trying to understand what is going on. So when I share more publicly about the hard parts of parenting I try really hard to come at it from that perspective, which has actually been really helpful in reorienting my own perspective on what is going on. (I'm not terrible at parenting - I'm working really hard to parent in a very broken system.)
Wow. Thank you. And hi :) Right! I mean, you are getting at the fundamental issue here. But if we don't share the details of how hard parenting is (including our kids) are the systemic imbalances are less believable? I get if we share the details, with the framing that our kids are not the _issue_ it's less likely to be harmful?
Oof - that question about what is believable is a good one! I think some part of wanting to share these stories or experiences is the desire to be believed and the frustration of not being believed when people try to fit what my kid is doing into "typical" experiences. Sometimes that makes sharing details even harder - if I am sharing details and it's not believed that is so upsetting.
This question, and the conversation here in the comments really has me thinking a lot about how often we share details, in what way, and how that might feel to kids (and retroactively feels to us!). I also acknowledge the inclination to cope with this thing that is really hard by turning it into a story to have a laugh about - and see how very dangerous that can be. As I think about this more, I would say that where I am sharing in more detail is where I already know I will be believed and met with validation and reassurance. When I share more publicly I *try* to focus more on the experience of parenting than the details of what my kid is doing, though they are so often tangled together. Most of what is hard is not totally understanding what is going on in my kid's brain or nervous system and I have long ago learned not to invite other's speculation into that. So instead I try to focus on how hard it is not to know, the things it brings up for me, the missteps I make in trying support him, etc.
I'm obsessed with this question. So important! So tangly! It wasn't until I was well into my 20s that I started to piece together just how harmful my mom's narration of my childhood illness and disability was to me. It was the days before social media, but witnessing the way she'd talk about me in front of classrooms and congregations, again and again, erased my experience -- it was like I was a player in her story, not the author of my own experience. I don't think this is an uncommon dynamic between parents and children, but I do think it's made more complicated when the child is disabled as if folds into much larger societal patterns/harms. Before my son was born, whether he had (or would have) a disability, I was adamant that I would not do this. I would understand the two of us as separate, distinct beings. I would never tell his stories as my own. And also, added to the tangle is the tremendous value I see in representing disabled motherhood -- how do we tell these (needed!) stories powerfully (which, I think, means specifically) while honoring their stories/selves as distinct/autonomous? Now that my son is here, I understand how impossibly hard it is to do both of these things at the same time. My imperfect guide has been to 1) keep the spotlight on my experience as a mom/stay embodied in my own POV, 2) be super cautious with what stories I share/if I do share, choose each word carefully, and 3) describe the moments I do share without judgment or assumption about what any of it means to him. Every piece of writing that includes him feels like starting from scratch with a whole set of unique concerns. I'm not sure I'm doing it right. I will probably continue to adapt as I go. But I think the questions are important. I want to keep them in the forefront. Thank you for inviting us into the quandary. I am soaking up everyone else's responses💛
I have been thinking about this comment for 5 hours! I have been focused on whether kids will feel loved when they read what their parents wrote, but you bring up the important question of will they feel _real_. It's already so hard to figure out who we are, without there being a public narrative clouding our perception. But also!! the easiest answer of, just don't talk about your kids can't be the solution because like you're saying, disabled parents are so absent from conversations/images/stories, so including the details is essential. And the details feel a lot less true if they are missing kids. Thanks for diving in here with me.
Ahh, reading your description of this tension is so helpful. I agree that focusing on whether or not kids will feel loved is important when writing about them. And also yes, I think you're exactly right -- a piece of this is about feeling REAL! Like their perceptions and feelings and impressions of the world are REAL. As a disabled kid, I heard my experience narrated to me in medical spaces, in church, through my parents. How does a person learn to hear their own voice, trust their intuition, tell their own stories when there are so many loud adult voices telling "the story" with authority and confidence? And also, disabled parenting can be so hard, confusing, isolating, and complicated, and a lack of storytelling and representation only adds to that. Storytelling is one of the most powerful tools we have to process, feel understood and empowered, imagine more, know we aren't alone. What a tangle. Here we are. Thank you for making space for this conversation and bringing us right to the heart of it💛 I think this is so important.
I think about this so much. It isn't my story to tell, but it is also such a big part of my story as a mother and being able to share the challenges, especially when they not typical of most kids or families, really helps me feel less alone. I have found some parenting groups that can be a great outlet for sharing stories privately and supporting each other but I do sometimes want to write more specifically about my experiences as a parent and I know it can mean so much to know that you are not alone. But, of course, it is more important for my kids to know that I won't share details of their lives.
yes! it sounds like we are having the same conversation in our heads :)
I write about my kid (age 7). I mostly read my blog posts out loud to both him and my partner, and although they rarely use it, they have veto power. When my kid was smaller and couldn’t consent, I mostly did the same as you and used my gut. I won’t take or post pictures of him in distress. I won’t make fun of him (should be a given, but a distressing number of parents do this). If I’m frustrated about something in parenting, I focus on my frustration and let my frustration be the humorous part. He said something recently that really stuck with me - we watch funny IG videos and he doesn’t like it when I share videos with his dad that make fun of kids (even though they make me laugh), like the one of Mike Tyson coming out in his boxing underpants and bomber jacket with the caption “my kid saying he’s ready for school.” It was a reminder to me that his feelings matter the most.
I love your GB stories! And you write about him with such evident adoration and care. But that's interesting that he feels more offended by something making fun of kids in general, vs a specific story. It's good to keep in mind. Maybe it's not the details that pose a risk, but a lack of respect?
That was my takeaway? Giving him a sense of agency over his story, by including him (although again, he's old enough now and wasn't before) and focusing more on myself. We also have a big hole in our narrative - my 15-year-old stepdaughter! She doesn't want to be written about, and I'm not her parent, so even though our family is a foursome, you'd never know by my blog.
This struck me as interesting too and totally makes sense. I can see my child seeing a video of that makes fun of kids an quickly extrapolate to how he might be made fun of in a similar way. Like a moment when you realize things are not as safe as you originally thought.
I also wrestle with this so much — to the point I’m hesitating to go into detail even here about what I’ve done right and wrong and how I hold boundaries! It’s so hard to untangle whose story it is when talking about shared experiences, particularly mother/child. And representation matters. AND — I completely agree with your take on Autism Out Loud and the huge problem of able-bodied parents talking for their disabled kids.
Thanks also for the reminder that we can look back, decide we got something wrong, and do something different moving forward.
This whole dialogue that you have started has me entranced because I am a mother who writes about struggling to find a place in a world with no room for children who don't fit the norm. I am the only voice they can have. So, I need to take on that responsibility, knowing the risk I take in overstepping the bounderies between their personhood and mine. I am so encouraged to see that you've sparked so much concern about this issue.
Thank you, Julie! It really isn't an easy question to answer. I'm glad you're thinking through it with us!
I can't speak from the perspective of a parent, but I struggle quite a bit when I see parents sharing their children's most private moments online, regardless of whether disability is involved. Conversely, I know that for many parents, it's about seeking support and solidarity. I think that if you're asking these tough questions, you're already miles ahead of the parents who don't stop to consider the impact on their kids at all.
Yes, I struggle with that too. Though it can be hard to know what the line is for most private. I think sometimes sharing details can highlight a social need (inclusive schools, affordable childcare, etc) in a way broader strokes can't, but the inability of children to meaningfully consent is so complicated. Maybe another question is if the child read it as an adult would they feel more or less loved?
The idea of love as a guide is quite powerful and important, I think.
This is complex, as you say. My child is older now, and she has complete veto power. I send her anything before I publish it. My favorite thing is that she’s now old enough to add her own comments, which I weave in, with permission. When she was younger, I would tell her the story and ask for permission. Same for my husband. And I’ve taken things down that I felt bad about later.
I love how you include her now.
These are such good questions. I have really struggled with this over the years and typically do not talk about my kids online beyond sharing that I am raising neurodivergent kids (to convey that I get this journey). I am so grateful for my clinical experience, which I also can’t share publicly, but gives me a lens to write from not as a mother. For my upcoming book, I’m not just changing names but I’m also pulling from real topics to craft fictional stories that I think will be relatable to the reader. While I, of course, am a supporter of privacy laws, I have always felt that they stop us from sharing our humanity at times.
Yes! Your position is tricky too, because as an expert, it's important that you show that you aren't just looking at this from the outside.
These are such, such good questions. I fully understand why you ask them, even if I don't have the answers. I do think being able to be brutally honest with a couple of people about the exhausting labor of parenting is a godsend, though. But then I'm not a writer (outside of may day job: legal writing) so I don't have to choose how/whether to integrate that information into more permanent, "preserved" content (I'm also not on any traditional/legacy social media so no choice needed about sharing my daughter there or not). I think the choices you've made are extremely ethical, though, and it would be clear to your children that you made your choices with care and with them in mind! (I can't speak to the other book, but I did of course read yours!)
Thank you, Mary Kaitlyn! And yes, that's a good distinction. I don't think it's ever an ethical choice to vent in public about your kids, or speak unfiltered. I think details shared need to come from a distant/thoughtful/considered place. Thank goodness for friends and/or partners who can hear the unfiltered versions.
Oof, so complicated. Private FB groups of academic parents of kids with disabilities, parents of 2e kids, parents trying to implement CPS, etc, were such a help to me when I felt so isolated and alone as a mom in my particular reality, so that’s one in-between where you’re not broadcasting your child’s struggles quite so broadly but can still have some measure of honesty
Right! And that makes me think about motivation. I think when it comes to sharing publicly, unloading can't be the goal. Your motivation has to be clearer and measured. I think private groups/friendships are spaces where camaraderie can be the goal (probably?!).
We've talked about this question a lot of course between ourselves, and it's such an excellent one. So messy and so personal. I (miranda) took a class with Rachel Yoder and a lot of the other folks in it wanted to work on motherhood memoirs, and so our class conversations often ended up in the weeds with this thorny question of where our stories as parents end and and where theirs begin, who decides and how and so on. I think probably sharing about parenthood publicly involves some level of risk that my kids won't be happy with something I've said or written. I try to keep that in mind always, but I've messed up before I'm sure. I don't know! Come back on the pod and let's talk about it! (and also everyone else in the comments here, too! so much excellent food for thought).
Yes! Please. I'd love to try to work through this out loud with you two.
I really struggle with how to handle talking about my kid’s health. She was diagnosed with the same condition that has disabled me. She will be 11 in a few days, so I feel more and more comfortable to defer to her comfort level with disclosing her experiences. She knows why I’m open about my experiences and has dipped her toe into advocacy, too.
But I hold most things back. I don’t share photos of her without her permission and never share photos or videos of her experiencing symptoms.
Reading the experiences of disabled adults who were disabled children greatly informs my approach. Every single person stresses the importance of privacy and self determination. And truly, as a 47-year-old woman I wouldn’t want my parents or spouse speaking publicly about my situation, needs or limits without my permission.
I’m happy we have the opportunity to have these conversations because the choices before us are complicated.
I love this. Why have I never considered how I would feel if someone wrote about me, and then adjusted accordingly? There are definitely things my husband could write that would make me feel seen and cared for, and others that would feel like a humiliation.