one question

This morning, a reader suggested that I share a post here written by a mom about her daughter, who has a disability. She suggested that it might be helpful for my readers searching for resources on puberty.  So I read it.

In the post, the mom talked in detail about how her daughter is perseverating on a desire to develop breasts, how she’s proclaiming the existence of (as yet non-existent) pubic hair, and about how she (the mom) is dreading the onset of her daughter’s period. For good measure, she posted a photo of her daughter’s undergarments.

I have no doubt that this mom loves her kid. Nor that, in the larger scheme of things, she respects her. But this is the farthest thing from respect. Inadvertent though it may be, it’s nothing short of public humiliation. That said, I will not be sharing it nor offering any information that might further identify it.*

Please, friends … please, please, PLEASE stop before you hit Post (on anything public) and ask yourself a question. Just one:


For bonus points, add “And it being there forever.”

I’m not posting this for the purpose of standing in judgment of another mother who walks this road. I’m posting it because I feel like I have to. Because it terrifies me for a generation of kids, the most intensely personal details of whose lives are routinely laid bare in a forum with an infinite memory.

To be clear, I have learned much of this the hard way. I have, undoubtedly, overshared … stories of my own fears, of intimate conversations with my children without thinking to ask for their consent, of the gritty details of my daughter’s painful meltdowns … long before I started thinking about the devastating implications therein.

But then I began to look at those stories from the perspective of my kids. And once I saw what I’d been doing, I couldn’t unsee it.

I wrote an entire post yesterday about how important trust is for our kids to succeed. How can they trust us when we swallow whole their right to even the most basic privacy?

Two years ago, I wrote a post explaining why I would continue to refuse to answer your fairly constant questions about Brooke and puberty. In it, I said the following (ages updated)

I know that many of you reading this are parents of kids who face different challenges, and many of those kids are younger than mine. I know that many of you look to our story to see to what to expect as you move further down the road. Some of you have asked me to talk here about puberty, to stand by my banner of No Secrets, No Shame and to share the details of the process. To offer a guide of sorts.

As much as I want to help, I can’t. I won’t.

Some time ago, Brooke’s older sister, Katie and I came to an agreement about what I would write about her here. If I don’t have the chance to ask her permission first, I am to trust my gut about what would embarrass her and what wouldn’t and, obviously, not write anything that I don’t think she would want me to share. My gut answer comes from one question … “If it were me, and I were fourteen, would I want my mom telling this story to everyone I know?” The answer is, most often, no.

Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.

If she chooses someday to talk about any or all of it, so be it, but she’s not in a position to make an informed decision yet. So it’s up to me to ask the question, “If it were me, and I were twelve, would I want my mom telling this story to everyone I know?”

The answer, my friends, is no.

Two years later, I ask my children for their permission to share stories and photos. But even when it’s granted (or long before I ask for it), I ask myself the question first. Because my job, first and foremost, is to protect my girls. Even if it’s from my own inadvertent impulse to expose them.

*note: I have made small changes to avoid identifying details.  

14 thoughts on “one question

  1. I need to chew on this for awhile, to find a right way to word my request. I do respect you and the way you educate all of us about things we haven’t even thought to consider (I used to post photos on Facebook without getting other peoples permission, for example). I am wondering if there are pieces of non personal advice you could provide those with younger children, maybe resources you found helpful (the American Girl books? Social stories?) to help navigate the puberty path. Sometimes other moms can provide more helpful advice than pediatricians

  2. I Love this so much…….I have older kids but you can hear me telling them all the time ssshhhhh keep your business private no one needs to know everything let’s print that picture and put it in a book it does not need to be on FB. Someday this may effect something you want to do later in life. I always get the standard Mom really relax…..but I still say it over and over. As one became an adult they learned the very hard way that people do google you and it can make a difference when you come to the age of wanting a real job. The boss shared it and said I know you were young so this is a pass but if you had of done this in college it would be different…..Live your life don’t spend your time posting your life. Share but don’t over share. Teach respect by respecting yourself. Real friends don’t need to post pics of their friends at their least attractive moment. Value your privacy you really have very little of it. Share the parts of your life that will help others and you to grow and learn. Think before you post PLEASE….

    • Yes, this so much. My oldest daughter found this out the hard way. She worked part time at an in home daycare and the parents of one kids didn’t like her FB posts. I had warned her about the stuff that she was posting, but she felt she knew better. She forgot who she was friends with on FB. She was fired. We had a discussion with the owner of the daycare and K now chalks that job loss up as a learning experience.
      My youngest, M still posts things I don’t agree with. I guess she hasn’t learned from her sister’s mistake.

  3. This is well put, Jess. Everyone needs to ask those questions. Social media has exposed many who would not have chosen to be exposed. We need to go back to a certain amount of privacy. We all deserve that.

    Love you,

  4. I agree–of course I do–but I don’t think this issue is as black and white as you make it sound.

    Everything I know about autism and how to advocate for my son (and, more importantly, to teach him to advocate for himself) came from other people, mostly parents (and I can hear the lecture coming, but that’s how it worked for me; I met other parents, all way smarter than I, who taught me how to celebrate my son for who he is). And I ‘met’ those people through social media. Many of their lessons came to me through blogs and tweets and Facebook status updates. They changed everything. Everything. And they did it by showing me that my son and my family were not alone. And they did it by showing me the joy, but acknowledging the challenges and how they had worked through them.

    Today, given the RIGHTFUL recognition of the right to privacy for our kids, that wouldn’t happen. In fact, it isn’t happening for me any longer, and so we are now wandering rather alone through puberty and its attendant challenges. And we’re making mistakes. I can feel and see us making them–pushing too hard, not pushing enough. But whereas people helped me find tools when my son was young, I’m having to fashion them for myself now. And it’s not pretty. And because he and I don’t have the in-real-life autistic community that you do (I’ve tried; trust me, I’ve tried), I don’t see any way out right now.

    My point is NOT that you should share things you feel are inappropriate. It’s that I can’t quite get on board with demonizing other parents for thinking that the connection, the understanding, the learning that comes from reaching out with “this is what we’re going through; do you have any ideas for me to help smooth the road a bit?” is worth the price. Yes, my son might be embarrassed if I shared details of his life at this point–and, in the end, looking at the pros and cons, that’s why I mostly don’t do it. But he’s suffering, too, because now we’re forced to figure this out all by ourselves. It makes me sad for the next generation of parents and kids, who won’t have this kind of online community, whose lives won’t be changed like mine was by people too numerous to list, but many of whom have left the building, as it were, taking with them a whole lot of life-altering wisdom.

    • i have things,

      i hear you.

      but (and this is a big BUT), compromising our kids’ privacy and dignity need not be mutually exclusive from getting the help we need from others to navigate this journey.

      those are not two separate states of being.

      not sharing publicly doesn’t mean not reaching out privately. not shaming our kids by telling ANYONE with an internet connection that they are eager to develop or think they spotted their first pubic hair or they have no friends to come to their party does not mean not connecting with others in a million, zillion private ways to brainstorm, ask for help, share experiences, find play dates (virtual or otherwise) etc, etc, etc.

      send a private message, create a CLOSED facebook group, start an email list with parents of autistic people or autistic adults in the area (or not in the area, who cares?), read autistic blogs and ask questions, ask the mom you see every week in the waiting room at speech therapy for her phone number.

      i talk with friends PRIVATELY about these things all the time. we vent, we cry, we figure things out and we support each other. OUT OF THE PUBLIC EYE.

      we can find people all over the place. depending on where you live, it may be at local meet ups, at advocacy / activist gatherings, at school, or, if you’re in an area where you just don’t have those things, in discussion groups, online forums, hell, even in the comments on diary. i see people do it all the time … “hey, can I DM you a question?”

      there are myriad settings in which we can find one another and THEN we can set about saying, “there are some things i’d love to pick your brain on .. may we take this off line?”

      i am not EVER suggesting that we shut down conversation, but i am begging to take it out of the permanent spotlight.

    • Honestly, I think you’re creating a false conflict here. Parents still can find support and fellowship over social media without making public the most highly personal information about their kids. Maybe there are things that stay only in private or closed forums, even as there are things that maybe shouldn’t go online at all.

      Also, you can ask people who are willing and consenting to give you the information you seek: autistic adults.

      You can have all the best of all worlds–community with other parents, the information you need…without violating your children’s rights to privacy.

      Really great forums that have tons of both parents and autistic adults where you can have questions posted anonymously include the Autism Women’s Network, Parenting Autistic Children with Love and Acceptance (PACLA), and We Are Like Your Child.

  5. Thank you for this. I agree wholeheartedly.

    I also think a really great book needs to be written for neurotypical parents of kids with autism who want to help them successfully navigate puberty. I think that when our kids are on the other side of it, some of us writer/parent folks should get together and crowdsource a book that gives no identifying information, but provides useful insight in a more global way. So I may come looking for you in a few years.

  6. I blog under a pseudonym and post pictures that don’t show our faces, precisely because I want Baguette to have some privacy. We’re a long way from puberty, given her age, but there are definitely things I don’t post about her because I don’t want it coming back to her. I want her to trust me, and how can she trust me if I don’t respect her?

    Thanks to all for the suggestions about resources and references. I want to learn more so that I’m prepared to help her, but I want to do it while protecting the privacy of as many people as possible.

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