Fantastic piece and I'm jazzed that the world has Seheen contributing in her perfect way. I am 2/3 through Momfluenced - excellent, horrifying, validating. I have a 15 yo with neurodivergence and I've always cringed at the term special needs. I call it extra needs. My younger child doesn't struggle or need all the interventions my 15yo does and parenting her is a relative breeze. "Special" feels like gaslighting in some ways. It ain't special: It's exhausting, worrisome, demanding, lonely, full of second-guessing, expensive and heartbreaking. I think there's also the issue of posting about the truth and then perhaps having to navigate the following responses: advice and/or brightsiding. I've learned a lot from the work of Kate Bowler (would love to hear Sara and Kate weigh-in on prosperity gospel/new age intersection of mom culture and she interviewed Rob Delaney for her podcast for upcoming episode) on how the overlay of hero/bravery/everything happens/brightsiding/advice-giving/pity makes the journey so much harder for those of us navigating hard stuff. Ultimately, if we in the trenches find a way to find or create meaning from our experience it's for us to proclaim as true for our journey and not universal truth. Suffering platitudes leaves others feeling like they helped us (or at least helped them feel better with their discomfort about our situation) and leaving us to feel gaslit. The creation of the machine-learning assisted app and being honest about the challenges of having a child with extra needs is a real gift. Thank you Sara and Seheen.
Thank you for this comment, Sarah. I'd love to listen to that intersection as well; I hadn't considered that it's from a new gospel/new age framework, you're so right. Sometimes I wish there were a parenting category of "parenting hard stuff" b/c I really grapple with all the different-but-not-quite-right terms out there.
This is where language really matters, right? I completely relate to your dislike of "special" and feel like it shows up in so many other ways that can be perceived as condescending, right? And yes to ALL of this ("prosperity gospel/new age intersection of mom culture") - could talk/think/write about this sticky intersection forever. Thank you so much for sharing Sarah.
This is a shockingly wonderful interview and piece of writing. I feel so validated and seen and inspired and empowered and humbled. I never would have heard of Sehreen or Sleuth otherwise and I am so, so grateful. Thank you so much.
"We left the hospital at the end of 2021, and I asked my older daughter what she wanted to be in 2022. Not what she wanted to do. And her answer was, “I want to be proud of myself.” "
Oh wow, I love this and am definitely going to pose the question to my kids soon. Sometimes I feel guilty about not signing my kids up for every activity under the sun (they are only in one thing each currently) but this is a great way to think about WHY we feel that pressure and what activities will contribute toward what they want to be (even if the activity is just family time at home)!
Please let me know what they say! It's a real palpable tension in parenting culture and I wonder if kids feel it themselves. My older daughter complains that adults always ask kids what they want to be when they grow up.
Theotbutterfly helped me immensely with learning to recognize dysregulation and finding out about heavy work with my ND kid. I also read a lot of the old blogs of Amy Storch (Amalah) and her column alpha mom about 3 years ago to read her experience with multiple ND kids. My youngest was 7 months old when the pandemic began and being home all the time certainly made me focus more on the interaction of my kids and how to coexist when my oldest was very explosive. Now that he’s 6, I will also add The Explosive Child helped us this year but it seems more tailored to school age kids.
A really great article, thank you for sharing this! As a doctor and a mum I think it is so important to hear the voices of both kids and their parents in any medical setting. They're the experts in their own bodies, health and experiences. Your innovation sounds incredible Sehreen, is it available to parents in the UK too? I know of so many people that would benefit from it.
I agree! I value the doctors who clearly try to center my little one's experience in her journey. Yes, it'll be useful to English speakers anywhere though in the immediate future the majority of the resources we list (like specialists, orgs, etc) will be U.S. based. We'd like to expand that though!
“And it's hard to de-program into that being-ness but for me, it's been a gorgeously liberating space to know that "being" is a more fundamental human value that "doing.” I'm happiest when I'm working, and I'm a perfectionist, which makes it really hard for me to just "be" and so I'm coming to the conclusion that "being" and "doing" can co-exist; similarly, I don't think capitalism is necessarily bad, it's just important to know what we're participating in and making a choice of when/where we participate in it.”
I relate to this big time and I would love to learn more about how you are finding ways for being and doing to co-exist
Thank you for your kind words, Mary. It's a lot of moments of reconciliation. But little things have changed, like when I need a break b/c I'm stressed, I feel less guilty about it. I tell myself 'it feels like a lot b/c it IS a lot' and then I remember that just being is kinda the antidote to the stress.
My kid has a rare genetic difference that means she is delayed meeting all her milestones, and she'll always be a little different herself, along with some accompanying medical issues. Our medical supply company has caused more than one fight with them, haha.
It's so lonely, you know? Your family asks when your kid is "going to get better" because they can't imagine your kid having a good life as she is, no matter how supportive they are- and no amount of trying to talk about it helps. Your coworkers get that look when you talk about your kid- pity, sort of. I hate it. Only your closest friends really treat you, and her, normally. And you watch strangers react to your kid, to you when you say how old she is. Watch their faces change, because they don't have a script for this. So they fall back on "hero," and "you're so strong," and whatnot.
And you hit the nail on the head when you said that people don't want to talk about it, because they don't want to think about it happening to them. Until it does.
Even I am not exempt- I don't go to our genetic difference facebook group very often, because I'm often not strong enough to face what could happen to her, to us, there. But I'm trying to be more present, to accept. To support. It's so hard.
I'm still muddling through. We're doing our best, and that has to be okay. I was an overachiever as a kid, "doing my best" without it being stellar is a hard thing. Being in the middle of the ocean and not knowing when I'll see an island is a hard thing. But we're paddling, and we know we're moving.
Oh Christina - this sounds so incredibly challenging. And the exhaustion of having to brace yourself for pitying looks or reductive, ableist assumptions that only one type of person can be "better." It's gotta be a fucking LOT. Thank you for sharing, and your paddling metaphor is so, so beautiful and illustrative. Thank you.
I have a child with intense mental health needs that have resulted in him being in a youth correctional facility. It's so very lonely. I am fortunate to have a circle of people in my life that understand the journey we have been on, but the vast majority know nothing of his psychiatric hospitalizations and his incarceration. Much of it is not my story to tell, and I don't want people to react to him badly once he is released.
I feel ALL of this. The emotions are deep and sometimes contradictory. I don't often go on our diagnosis group either. It was a weird thing b/c it wasn't until my therapist gave me 'permission' that I decided to stop getting notifications. We're paddling indeed... <3
Fantastic piece and I'm jazzed that the world has Seheen contributing in her perfect way. I am 2/3 through Momfluenced - excellent, horrifying, validating. I have a 15 yo with neurodivergence and I've always cringed at the term special needs. I call it extra needs. My younger child doesn't struggle or need all the interventions my 15yo does and parenting her is a relative breeze. "Special" feels like gaslighting in some ways. It ain't special: It's exhausting, worrisome, demanding, lonely, full of second-guessing, expensive and heartbreaking. I think there's also the issue of posting about the truth and then perhaps having to navigate the following responses: advice and/or brightsiding. I've learned a lot from the work of Kate Bowler (would love to hear Sara and Kate weigh-in on prosperity gospel/new age intersection of mom culture and she interviewed Rob Delaney for her podcast for upcoming episode) on how the overlay of hero/bravery/everything happens/brightsiding/advice-giving/pity makes the journey so much harder for those of us navigating hard stuff. Ultimately, if we in the trenches find a way to find or create meaning from our experience it's for us to proclaim as true for our journey and not universal truth. Suffering platitudes leaves others feeling like they helped us (or at least helped them feel better with their discomfort about our situation) and leaving us to feel gaslit. The creation of the machine-learning assisted app and being honest about the challenges of having a child with extra needs is a real gift. Thank you Sara and Seheen.
Thank you for this comment, Sarah. I'd love to listen to that intersection as well; I hadn't considered that it's from a new gospel/new age framework, you're so right. Sometimes I wish there were a parenting category of "parenting hard stuff" b/c I really grapple with all the different-but-not-quite-right terms out there.
This is where language really matters, right? I completely relate to your dislike of "special" and feel like it shows up in so many other ways that can be perceived as condescending, right? And yes to ALL of this ("prosperity gospel/new age intersection of mom culture") - could talk/think/write about this sticky intersection forever. Thank you so much for sharing Sarah.
This is a shockingly wonderful interview and piece of writing. I feel so validated and seen and inspired and empowered and humbled. I never would have heard of Sehreen or Sleuth otherwise and I am so, so grateful. Thank you so much.
I'm grateful to you for this! It means a lot, thank you.
"We left the hospital at the end of 2021, and I asked my older daughter what she wanted to be in 2022. Not what she wanted to do. And her answer was, “I want to be proud of myself.” "
Oh wow, I love this and am definitely going to pose the question to my kids soon. Sometimes I feel guilty about not signing my kids up for every activity under the sun (they are only in one thing each currently) but this is a great way to think about WHY we feel that pressure and what activities will contribute toward what they want to be (even if the activity is just family time at home)!
Right? I also want to ask this question of ME, you know?
Please let me know what they say! It's a real palpable tension in parenting culture and I wonder if kids feel it themselves. My older daughter complains that adults always ask kids what they want to be when they grow up.
Theotbutterfly helped me immensely with learning to recognize dysregulation and finding out about heavy work with my ND kid. I also read a lot of the old blogs of Amy Storch (Amalah) and her column alpha mom about 3 years ago to read her experience with multiple ND kids. My youngest was 7 months old when the pandemic began and being home all the time certainly made me focus more on the interaction of my kids and how to coexist when my oldest was very explosive. Now that he’s 6, I will also add The Explosive Child helped us this year but it seems more tailored to school age kids.
A really great article, thank you for sharing this! As a doctor and a mum I think it is so important to hear the voices of both kids and their parents in any medical setting. They're the experts in their own bodies, health and experiences. Your innovation sounds incredible Sehreen, is it available to parents in the UK too? I know of so many people that would benefit from it.
I agree! I value the doctors who clearly try to center my little one's experience in her journey. Yes, it'll be useful to English speakers anywhere though in the immediate future the majority of the resources we list (like specialists, orgs, etc) will be U.S. based. We'd like to expand that though!
Sehreen,
“And it's hard to de-program into that being-ness but for me, it's been a gorgeously liberating space to know that "being" is a more fundamental human value that "doing.” I'm happiest when I'm working, and I'm a perfectionist, which makes it really hard for me to just "be" and so I'm coming to the conclusion that "being" and "doing" can co-exist; similarly, I don't think capitalism is necessarily bad, it's just important to know what we're participating in and making a choice of when/where we participate in it.”
I relate to this big time and I would love to learn more about how you are finding ways for being and doing to co-exist
Your kids are so lucky to have you as their mom.
Thank you for your kind words, Mary. It's a lot of moments of reconciliation. But little things have changed, like when I need a break b/c I'm stressed, I feel less guilty about it. I tell myself 'it feels like a lot b/c it IS a lot' and then I remember that just being is kinda the antidote to the stress.
Mastery of hardship is where we find grace ❤️
Loved this convo so much!
Thank you for this.
My kid has a rare genetic difference that means she is delayed meeting all her milestones, and she'll always be a little different herself, along with some accompanying medical issues. Our medical supply company has caused more than one fight with them, haha.
It's so lonely, you know? Your family asks when your kid is "going to get better" because they can't imagine your kid having a good life as she is, no matter how supportive they are- and no amount of trying to talk about it helps. Your coworkers get that look when you talk about your kid- pity, sort of. I hate it. Only your closest friends really treat you, and her, normally. And you watch strangers react to your kid, to you when you say how old she is. Watch their faces change, because they don't have a script for this. So they fall back on "hero," and "you're so strong," and whatnot.
And you hit the nail on the head when you said that people don't want to talk about it, because they don't want to think about it happening to them. Until it does.
Even I am not exempt- I don't go to our genetic difference facebook group very often, because I'm often not strong enough to face what could happen to her, to us, there. But I'm trying to be more present, to accept. To support. It's so hard.
I'm still muddling through. We're doing our best, and that has to be okay. I was an overachiever as a kid, "doing my best" without it being stellar is a hard thing. Being in the middle of the ocean and not knowing when I'll see an island is a hard thing. But we're paddling, and we know we're moving.
Oh Christina - this sounds so incredibly challenging. And the exhaustion of having to brace yourself for pitying looks or reductive, ableist assumptions that only one type of person can be "better." It's gotta be a fucking LOT. Thank you for sharing, and your paddling metaphor is so, so beautiful and illustrative. Thank you.
I have a child with intense mental health needs that have resulted in him being in a youth correctional facility. It's so very lonely. I am fortunate to have a circle of people in my life that understand the journey we have been on, but the vast majority know nothing of his psychiatric hospitalizations and his incarceration. Much of it is not my story to tell, and I don't want people to react to him badly once he is released.
I feel ALL of this. The emotions are deep and sometimes contradictory. I don't often go on our diagnosis group either. It was a weird thing b/c it wasn't until my therapist gave me 'permission' that I decided to stop getting notifications. We're paddling indeed... <3