Ableism, Disability, and Love

Emily Oster

7 min Read Emily Oster

Emily Oster

Ableism, Disability, and Love

"Raising a Rare Girl" with Heather Lanier

Emily Oster

7 min Read

A week or two ago I promised some newsletter variety, and here I am following through.

One of the wonderful things about writing books is that other people send you their books to read, often before they are out. In the last year I got to read everything from Early (about prematurity) and The Trying Game (about IVF) to Veritas (about a forged biblical fragment).

And even more fun, sometimes authors offer to really engage. Reading a book is always a bit like being in conversation with an author, but even more fun is actual conversation.

So: I am very excited today to relay an (virtual, obviously) conversation I had with the author of Raising a Rare Girl, which is out tomorrow. You can find it here.

I loved this book, and I do not want to give too much away. But for some context… the book is Heather Lanier’s memoir about raising a child, Fiona, with a very rare genetic condition. It’s about navigating a system to advocate for your kid, but also about navigating her own feelings and changing her expectations for what is possible. It’s about abelism, and disability, and love. It’s just great.

So: enjoy the conversation and, if you do, consider the book. And thanks, Heather, for engaging with me!


Emily:

Let me start by asking : how is your family doing with the virus?  How have you been surviving quarantine? How old are the kids now and how is Fiona doing? 

Heather:

Petra is 7, and Fiona is 9. (I find myself asking the same cliché every parent asks: How did they get so big? Or, at least in Fiona’s case, so old?)

This quarantining experience is a ridiculous juggling act, for sure. I wrote to a friend recently that we’re always juggling a hundred balls, and some days, half the balls are on the floor, and the other half are actually feelings. In other words, it’s an emotionally complex time. I’ve bought Marc Brackett’s Permission to Feel and have made it a point to ask everyone in the house regularly, “How are you feeling?” I might be overdoing it, but I’ve caught some truly remarkable moments this way.

My husband and I have also prioritized exercise. He now lifts a bar of giant weights in the garage. I manically jump around in the living room to Shaun T’s instructions. The unintended plus is that Fiona has actually made some pretty impressive gross motor gains. She does the workout videos with me, and can now get two or three inches of air between her feet and the floor. In all this chaos, there have been unexpected gifts like that. Here and there, we get to connect with each other in ways we otherwise wouldn’t have. But make no mistake, this is an incredibly hard time–for every parent!

Emily:

I like to put things in context with numbers. How unusual was your family’s experience, in that sense?

Heather:

Interesting question. A rare disease is something that affects one in 1,500 people. My daughter’s syndrome, Wolf-Hirschhorn (or 4p-), affects one in 50,000 people. But if you tally up all the rare diseases, and all the ways that bodies present as unique or outside what the medical world calls “normal,” our experience is more common than 1 in 50,000 suggests. I think many parents find themselves in this situation: What does it mean to love a child who falls outside of what people call “normal,” a measurement our culture has revered for over a hundred years? It’s challenging, and it’s also liberating.

Emily:

And how did you find you were treated, both by the medical establishment and by the culture at large?

Heather:

The message I immediately got from the medical community was that my daughter was “wrong.” You could feel this in the delivery room. They whisked Fiona away. I later learned it was because of her weight. Fiona was born full term weighing four pounds, twelve ounces. They asked me if I’d gained the proper weight (I did). They asked if I’d done drugs while pregnant (I didn’t.) The morning before our release, a pediatrician came to do a final examination. Finally, looking at her, he said, “It’s either bad seed, or bad soil.” I was stunned.

Since then, we’ve met amazing doctors. But we’ve also met medical professionals who’ve continued to view our child as less-than or broken in some way. These are sometimes very good people. But they can’t help but express a value embedded in our culture–that a person with disabilities, particularly intellectual disabilities, is somehow worth less. It can be painful. But it’s also eye-opening.

Emily:

How do you define ‘able-ism’?

Heather:

Ableism is the belief, implicit or explicit, that an able-bodied life is superior to a disabled life. And ableism is the discrimation and oppression people with disabilities face as a result of that belief.

Emily:

What have been some of the most surprising discoveries or moments in your journey as Fiona’s mom?

Heather:

Oh, there have been so many! Parenting is nothing if not surprising.

One of the most surprising discoveries was that I too was ableist. Six or so months into Fiona’s life, it dawned on me that I’d always valued an able-bodied life more than a disabled one. This was not an explicit idea, not a belief I actively cultivated. But in acknowledging this, I take a cue from Ibram X. Kendi, author of How to Be an Anti-Racist, who argues that, to be anti-racist, a person needs to admit their implicit racism. I think the same can be said for the work of anti-ableism.

I’d always been an overachiever. I’d been measured and ranked my whole life, separated into “smart kid” classes as early as third grade. By the way, the earliness of that says more about American education than it does about me! But I’d totally bought into the yardsticks used to measure human beings. And then I had Fiona. She did not “meet the milestones,” as they say. While kids her age were sitting up, she was still working on head control. And yet, I saw in her eyes what every parent sees in their child: the weight and measure of the world. She was awesome! So, in having Fiona, I not only realized how much grip those yardsticks had on me, I saw their ultimate silliness–and their ableism.

Here’s another surprising moment. At a year old, Fiona could only make two sounds, Ah and Mm. Based on the developmental charts, her therapists said she functioned at the age of a 4-month-old. They seemed chronically disappointed in her. Then we moved to a new state, and Fiona had a new speech evaluation. Immediately, the therapist interacted with Fiona differently. She saw all that my daughter could do! This happened in her first seconds with Fiona. The therapist walked through the door and said “Hello.” Fiona clapped and smiled. The therapist looked at me and said, “She just greeted me. That’s a great sign.”

Throughout the evaluation, I got to see my daughter’s communication through a new lens of capabilities. She was a little over a year old, and she couldn’t babble, but she could process novel requests. She could articulate some of her needs, with only those Ah and Mm sounds. She could “greet” people, not yet with a wave, but with a smile and a clap. This therapist saw Fiona as very, very capable in communication–with plenty of room to grow.

So I realized that the milestone charts–those yardsticks we use for infants–simply can’t capture the complex expression of human growth. Because the former therapists were often pretty pessimistic about Fiona’s achievements, I also saw that using those charts to peg a kid as a certain “developmental age” can have really adverse effects. I later learned that there are two lenses through which you can view a kid: deficit lens, and capacity-building lens. Does an educator see “what’s broken and in need of fixing?” This is deficit-thinking, and it’s based in ableism. Or does the educator see what the child is capable of, and then make a plan to to build on that? This capacity-building lens honors the humanity of the child.

Interestingly enough, I later read that capacity-building educators tend to set higher goals for their kids–and help them achieve higher outcomes.

Emily:

What would you recommend to other parents who find themselves advocating, sometimes really fighting, to get their kid the right care?

Heather:

Look for those capacity-builders! Look for the optimists, the enthusiasts, the people who perceive the full humanity of your child. It can be hard to find them sometimes, but try to find at least one, and get them in your corner. From that positive perspective, so many things are possible!

Also, pay attention to your gut when you know you’re in the company of the opposite. It feels super icky to be sitting with someone who sees your kid as a series of deficits. This is why so many of us loathe IEP meetings–because some special educators are stuck on the questions of “What’s wrong? How is this kid outside the measure of ‘normal’? How can we squeeze them back onto the normal curve?” Reject those people’s values. As Thomas Armstrong, Executive Director of the American Institute for Learning and Human Development, said, “We don’t look at a calla lily and say that it has a ‘petal deficit disorder.’ We appreciate its beautiful shape.” The same is true for our neurodiverse kids.

Emily:

What do you most hope readers take from the book?

Heather:

I hope parents of unique kids feel seen, connected, and inspired. I also hope the book helps us cast off the tyranny of “normal” and honor our kids–and each other–as unique expressions of humanity. But above all, I hope people read the book as a narrative version of Pema Chödrön’s When Things Fall Apart. In other words, I hope it helps people, non-parents included, let the unexpected circumstances of our lives break us open into beautiful new ways of being–and loving.

Emily:

I wondered how you think about writing about your kids. I think about this a lot when I write about mine – do you ask them if it is okay?  Did you show them the book?  

Heather:

I purposefully stopped the book’s chronology at Fiona’s entry into kindergarten. It felt right that, just as she was entering into the public sphere, I was ending my control of the narrative.

I did write about my kids more when they were younger–when they were literally tethered to my body. That felt right, because we were so inextricably linked–and therefore our narrative was too. I’ve always been wary of any absolute ban on parents writing about their kids. It has gendered implications. Women do the bulk of the caregiving in this country. Prohibiting them from writing about their experiences harkens to that whole idea of “keeping the domestic sphere private.” Historically, the domestic sphere has been the sphere of women, so if it must stay private, then we’re prohibiting women from owning their expertise.

To me, the question is not “Should we write about our kids,” but “How?” Now that my kids are older, I don’t write about them so much as I write about the conditions of being their parent. I try to keep the focus on my own narrative, not theirs. And I’m always weighing the costs and benefits of what I write. “If I tell this story, why? Is it to inspire change? Is it just to vent? Who could be hurt if I write this?” Every nonfiction writer asks these questions, and there are no hard-and-fast rules, but we intuit our way, with love. I wrote about this process in this blog post, the summer before Fiona entered kindergarten. A lot of it remains true.

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The AAP’s guidelines recommend sleeping in the same room as your baby “ideally for the first six months.” However, the risk of SIDS is dramatically lower after four months, and the evidence in favor of the protective effect of room sharing is quite weak (both overall and even more so after four months). There is also growing evidence that infants who sleep in their own room by four months sleep better at four months, better at nine months, and even better at 30 months.

With this in mind, it’s worth asking why this recommendation continues at all — or at least why the AAP doesn’t push it back to four months. They say decreased arousals from sleep are linked to SIDS, which could mean that babies sleeping in their own room is risky. But this link is extremely indirect, and they do not show direct evidence to support it.

According to the data we have, parents should sleep in the same room as a baby for as long as it works for them! Sharing a room with a child may have negative impacts on both child and adult sleep. We should give families more help in navigating these trade-offs and making the decisions that work best for them.

#emilyoster #parentdata #roomsharing #sids #parentingguide

The AAP’s guidelines recommend sleeping in the same room as your baby “ideally for the first six months.” However, the risk of SIDS is dramatically lower after four months, and the evidence in favor of the protective effect of room sharing is quite weak (both overall and even more so after four months). There is also growing evidence that infants who sleep in their own room by four months sleep better at four months, better at nine months, and even better at 30 months.

With this in mind, it’s worth asking why this recommendation continues at all — or at least why the AAP doesn’t push it back to four months. They say decreased arousals from sleep are linked to SIDS, which could mean that babies sleeping in their own room is risky. But this link is extremely indirect, and they do not show direct evidence to support it.

According to the data we have, parents should sleep in the same room as a baby for as long as it works for them! Sharing a room with a child may have negative impacts on both child and adult sleep. We should give families more help in navigating these trade-offs and making the decisions that work best for them.

#emilyoster #parentdata #roomsharing #sids #parentingguide
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It was an absolute pleasure to be featured on the @tamronhallshow! We talked about all things data-driven parenting and, in this clip, what I call the plague of secret parenting. To balance having a career and having a family, we can’t hide the fact that we’re parents. If mothers and fathers at the top can speak more openly about child-care obligations, it will help us all set a new precedent.

Watch the full segment at the link in my bio 🔗

#tamronhall #tamronhallshow #emilyoster #parentingsupport #workingparents

It was an absolute pleasure to be featured on the @tamronhallshow! We talked about all things data-driven parenting and, in this clip, what I call the plague of secret parenting. To balance having a career and having a family, we can’t hide the fact that we’re parents. If mothers and fathers at the top can speak more openly about child-care obligations, it will help us all set a new precedent.

Watch the full segment at the link in my bio 🔗

#tamronhall #tamronhallshow #emilyoster #parentingsupport #workingparents
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Invisible labor. It’s the work — in our households especially — that has to happen but that no one sees. It’s making the doctor’s appointment, ensuring birthday cards are purchased, remembering the milk.

My guest on this episode, @everodsky, has come up with a solution here, or at least a way for us to recognize the problem and make our own solutions. I’ve wanted to speak with Eve for ages, since I read her book Fair Play. We had a great conversation about the division of household labor, one I think you’ll get a lot out of!

Listen and subscribe to ParentData with Emily Oster in your favorite podcast app 🎧

#emilyoster #parentdata #parentdatapodcast #parentingpodcast #householdtips #fairplay #invisiblelabor

Invisible labor. It’s the work — in our households especially — that has to happen but that no one sees. It’s making the doctor’s appointment, ensuring birthday cards are purchased, remembering the milk.

My guest on this episode, @everodsky, has come up with a solution here, or at least a way for us to recognize the problem and make our own solutions. I’ve wanted to speak with Eve for ages, since I read her book Fair Play. We had a great conversation about the division of household labor, one I think you’ll get a lot out of!

Listen and subscribe to ParentData with Emily Oster in your favorite podcast app 🎧

#emilyoster #parentdata #parentdatapodcast #parentingpodcast #householdtips #fairplay #invisiblelabor
...

Prenatal vitamins 💊 If there is any product that seems designed to prey on our fears, it’s this one. You’re newly pregnant and you want to do it right. Everyone agrees you need prenatal vitamins, so you get them. But do you want to be that person who just… buys the generic prenatal vitamins?

Good news: fancier vitamins are not better.  Folic acid is the most important prenatal ingredient. Iron (with vitamin C) and DHA are also nice to have. Other included ingredients have only weak or no evidence to support their use. (If you do not consume animal products, add B12, plus a few others depending on your diet.)

Vitamins are just vitamins. Any prenatal vitamin that contains these is enough. 

Comment “Link” for a DM to an article with everything you need to know about prenatal vitamins.

#emilyoster #parentdata #prenatalvitamins #pregnancydiet #pregnancytips

Prenatal vitamins 💊 If there is any product that seems designed to prey on our fears, it’s this one. You’re newly pregnant and you want to do it right. Everyone agrees you need prenatal vitamins, so you get them. But do you want to be that person who just… buys the generic prenatal vitamins?

Good news: fancier vitamins are not better. Folic acid is the most important prenatal ingredient. Iron (with vitamin C) and DHA are also nice to have. Other included ingredients have only weak or no evidence to support their use. (If you do not consume animal products, add B12, plus a few others depending on your diet.)

Vitamins are just vitamins. Any prenatal vitamin that contains these is enough.

Comment “Link” for a DM to an article with everything you need to know about prenatal vitamins.

#emilyoster #parentdata #prenatalvitamins #pregnancydiet #pregnancytips
...

When it comes to introducing your newborn to the world, timing matters. It’s a good idea to minimize germ exposure in the first 6-8 weeks; after that, it’s inevitable and, very likely, a good idea! This doesn’t mean you need to be trapped inside. The most significant exposure risks are from seeing other people at home — family, etc. These interactions are not infinitely risky, but they do pose more risk than a walk or a trip to the grocery store, since they involve closer interaction. Think simple and make sure everyone is washing their hands before holding the baby. 💛

#parentdata #emilyoster #newborncare #parentingadvice #parentingtips

When it comes to introducing your newborn to the world, timing matters. It’s a good idea to minimize germ exposure in the first 6-8 weeks; after that, it’s inevitable and, very likely, a good idea! This doesn’t mean you need to be trapped inside. The most significant exposure risks are from seeing other people at home — family, etc. These interactions are not infinitely risky, but they do pose more risk than a walk or a trip to the grocery store, since they involve closer interaction. Think simple and make sure everyone is washing their hands before holding the baby. 💛

#parentdata #emilyoster #newborncare #parentingadvice #parentingtips
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The first edition of Hot Flash is out now! Comment “Link” for a DM to learn more about the late-reproductive stage.

There are times when we expect hormonal shifts. Our reproductive lives are bookended by puberty and menopause. We discuss those changes often because they are definitive and dramatic — a first period is something many of us remember clearly. But between ages 13 and 53, our hormones are changing in more subtle ways. During the late-reproductive stage (in your 40s), you can expect a lot of changes in your menstrual cycle, including the length and symptoms you experience throughout. It’s an important time in our lives that is often overlooked!

🔥 Hot Flash from ParentData is a weekly newsletter on navigating your health and hormones in the post-reproductive years. Written by Dr. Gillian Goddard, Hot Flash provides all of the information you need to have a productive, evidence-based conversation about hormonal health with your doctor.

#emilyoster #parentdata #hotflash #perimenopause #womenshealth

The first edition of Hot Flash is out now! Comment “Link” for a DM to learn more about the late-reproductive stage.

There are times when we expect hormonal shifts. Our reproductive lives are bookended by puberty and menopause. We discuss those changes often because they are definitive and dramatic — a first period is something many of us remember clearly. But between ages 13 and 53, our hormones are changing in more subtle ways. During the late-reproductive stage (in your 40s), you can expect a lot of changes in your menstrual cycle, including the length and symptoms you experience throughout. It’s an important time in our lives that is often overlooked!

🔥 Hot Flash from ParentData is a weekly newsletter on navigating your health and hormones in the post-reproductive years. Written by Dr. Gillian Goddard, Hot Flash provides all of the information you need to have a productive, evidence-based conversation about hormonal health with your doctor.

#emilyoster #parentdata #hotflash #perimenopause #womenshealth
...

There are plenty of reels telling you how to parent. Plenty of panic headlines saying that “studies show” what’s best for your kid. Even good data, from a trusted source, can send us into a spiral of comparison. But I want you to remember that no one knows your kid better than you. It’s important to absorb the research, but only you will know the approach that works best for you and your child. 💙

Now tell me in the comments: what’s a parenting move you’ve made recently that feels right to you?

#parentingcommunity #parentingsupport #parentingquotes #emilyoster #parentdata

There are plenty of reels telling you how to parent. Plenty of panic headlines saying that “studies show” what’s best for your kid. Even good data, from a trusted source, can send us into a spiral of comparison. But I want you to remember that no one knows your kid better than you. It’s important to absorb the research, but only you will know the approach that works best for you and your child. 💙

Now tell me in the comments: what’s a parenting move you’ve made recently that feels right to you?

#parentingcommunity #parentingsupport #parentingquotes #emilyoster #parentdata
...

Let’s talk about sex (after) baby! Today on the podcast, I was lucky enough to speak with @enagoski about her new book on sexual connection in long-term relationships. Especially after having kids, this is something many people struggle with. Emily tells us to stop worrying about what’s “normal” and focus on pleasure in its many forms.

Listen and subscribe to ParentData with Emily Oster in your favorite podcast app 🎧

#parentdata #parentdatapodcast #emilyoster #emilynagoski #comeasyouare #cometogether #longtermrelationship #intimacy #relationships

Let’s talk about sex (after) baby! Today on the podcast, I was lucky enough to speak with @enagoski about her new book on sexual connection in long-term relationships. Especially after having kids, this is something many people struggle with. Emily tells us to stop worrying about what’s “normal” and focus on pleasure in its many forms.

Listen and subscribe to ParentData with Emily Oster in your favorite podcast app 🎧

#parentdata #parentdatapodcast #emilyoster #emilynagoski #comeasyouare #cometogether #longtermrelationship #intimacy #relationships
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Ever wondered if you can safely use leftover baby formula? 🍼 The CDC says to throw out unused formula immediately because of the risk of bacterial growth. However, research suggests that bacterial concentrations do not appreciably increase after 3, 12, or even 24 hours at refrigerator temperatures. Good news! This means there’s not a strong data-based reason to throw out formula right away if you store it in the fridge.

Comment “Link” for a DM to an article on another common formula question: should you throw away old formula powder?

#emilyoster #parentdata #babyformula #babyfeeding #parentingstruggles

Ever wondered if you can safely use leftover baby formula? 🍼 The CDC says to throw out unused formula immediately because of the risk of bacterial growth. However, research suggests that bacterial concentrations do not appreciably increase after 3, 12, or even 24 hours at refrigerator temperatures. Good news! This means there’s not a strong data-based reason to throw out formula right away if you store it in the fridge.

Comment “Link” for a DM to an article on another common formula question: should you throw away old formula powder?

#emilyoster #parentdata #babyformula #babyfeeding #parentingstruggles
...

What’s the most important piece of advice for new parents? Here’s one answer, but I want to hear from you! Share your suggestions in the comments ⬇️

#emilyoster #parentdata #parentingtips #parentingadvice #newparents #parentingcommunity

What’s the most important piece of advice for new parents? Here’s one answer, but I want to hear from you! Share your suggestions in the comments ⬇️

#emilyoster #parentdata #parentingtips #parentingadvice #newparents #parentingcommunity
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What's in the bag of a Vagina Economist? 👀 Someone please tell me this looks familiar to you.

What`s in the bag of a Vagina Economist? 👀 Someone please tell me this looks familiar to you. ...

Comment ”link” for a DM to learn more about tongue ties 🔗

Breastfeeding is often difficult, especially at the start. For babies with tongue ties, many infants (and their moms) struggle to get the hang of a good latch. This can lead to painful nipples and to inefficient feeding, and then low weight gain.

So what does the data say about the increasingly common practice of cutting tongue-ties in infants to improve breastfeeding success? Several weeks ago, @nytimes published a long and quite scary article on this topic.

After diving into the data, here is what I found. There is limited evidence that frenotomy procedures improve breastfeeding efficacy and the harms of the procedure are minimal. Many women do report that it alleviates pain and helps them with breastfeeding. However, it should not be a first-line treatment for breastfeeding problems.

#parentdata #emilyoster #tonguetie #tonguetiebabies #breastfeedingsupport

Comment ”link” for a DM to learn more about tongue ties 🔗

Breastfeeding is often difficult, especially at the start. For babies with tongue ties, many infants (and their moms) struggle to get the hang of a good latch. This can lead to painful nipples and to inefficient feeding, and then low weight gain.

So what does the data say about the increasingly common practice of cutting tongue-ties in infants to improve breastfeeding success? Several weeks ago, @nytimes published a long and quite scary article on this topic.

After diving into the data, here is what I found. There is limited evidence that frenotomy procedures improve breastfeeding efficacy and the harms of the procedure are minimal. Many women do report that it alleviates pain and helps them with breastfeeding. However, it should not be a first-line treatment for breastfeeding problems.

#parentdata #emilyoster #tonguetie #tonguetiebabies #breastfeedingsupport
...

Tag a friend who needs to hear this 💛 For many choices in parenting, there is no one right answer. We can use research and data to make informed decisions, but ultimately, it won’t tell you what to do. Only you can decide what will be best for your kids and your family.

I’m here to remind you to take a deep breath and trust yourself. I’ll be here to support you along the way. 

Thank you to everyone who submitted videos, including:
@sarah.consoli
@jess_lynn627
@nicolevandenwills
@thedrblair
@ncbenedict29
@haleycimini
@iamkellysnodgrass
@calesse_smith
@garnet__gordon
@jencoopgaiser87
@danigirl18c
@jamielundergreen
@carly_comber
@thecelebratingmama
@emilyannbynum
@eeliz413

#emilyoster #parentdata #parentingadvice #parentingsupport #parentingquotes

Tag a friend who needs to hear this 💛 For many choices in parenting, there is no one right answer. We can use research and data to make informed decisions, but ultimately, it won’t tell you what to do. Only you can decide what will be best for your kids and your family.

I’m here to remind you to take a deep breath and trust yourself. I’ll be here to support you along the way.

Thank you to everyone who submitted videos, including:
@sarah.consoli
@jess_lynn627
@nicolevandenwills
@thedrblair
@ncbenedict29
@haleycimini
@iamkellysnodgrass
@calesse_smith
@garnet__gordon
@jencoopgaiser87
@danigirl18c
@jamielundergreen
@carly_comber
@thecelebratingmama
@emilyannbynum
@eeliz413

#emilyoster #parentdata #parentingadvice #parentingsupport #parentingquotes
...

Congratulations on making it through another year of panic headlines! We’ve had some doozies this year, like aspartame causing cancer and the perils of white noise, but these headlines are very often based on poor data. Correlation does not equal causation. There will certainly be more panic headlines in 2024, but ParentData is here to debunk them for you.

#emilyoster #parentdata #happynewyear2024 #panicheadline #datadriven

Congratulations on making it through another year of panic headlines! We’ve had some doozies this year, like aspartame causing cancer and the perils of white noise, but these headlines are very often based on poor data. Correlation does not equal causation. There will certainly be more panic headlines in 2024, but ParentData is here to debunk them for you.

#emilyoster #parentdata #happynewyear2024 #panicheadline #datadriven
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