A while ago, I went through the very long process of changing the girls’ real names to pseudonyms on the blog. I felt that it was important to try to restore their online anonymity to whatever degree I could. In an effort to maintain both their safety and their privacy, I ask that if you know their real names and/ or where we live, that you do not make reference to either in your comments on Diary or any public forum related to Diary. Any such references will be hastily removed.
I call my family by nic-names on one of my blogs but on my main blog I don’t….
I hadn’t really considered “privacy” or “safety”
Perhaps I should…
Email me your thoughts on your decision? Please? It might help me reason out changing my blog names and also my banner (which lists our names under it)
With everything linked to my facebook and all my info on there…. I guess it didn’t seem important.
Now I wonder. =/
donna, first and foremost it’s a matter of safety. i just didn’t feel comfortable with so much information out there about my kids along with their full names and images. in today’s day and age, it began to feel reckless. the blog had begun as a very personal thing – the audience was very small and mostly friends and family. but it has since spun into something completely different. with thousands of people reading it, i can no longer feel comfortable disclosing so much about my kids publicly. they are also getting to the age where they (and their friends!) become internet savvy. i couldn’t stand the thought that if a friend googled katie’s name, they’d have intimate details of her life in front of them. just didn’t feel right for me. hope that helps!
I got hooked on your blog months ago by a friend, and I am amazed at all you do for BOTH your beautiful girls every day. And I know the blog is being modest. I cannot imagine your daily routine keeping everything going. I was wondering if you ever thought about turning the blog into a book? Complete with name changes and everything. I didn’t know if was feasible for you, as I know your family’s privacy is very important, but if you ever have the urge, I think you have the makings of an amazing author! Thank you for this blog. I do not have a child with autism, but I am a teacher, and it just brings that much more clarity into my understanding of autism. Your blog is your “blue hair”! Thank you!
thanks so much, jaime! i’d love to create a book at some point, but i’m just not sure what shape it would take yet. i think it will kind of present itself when the time is right 🙂 thx for the kind words.
I am with you on this one.That is why the names of my children have been changed to protect the innocent, especially as they try to find jobs in our community. My brother and his family all have their full names on Facebook; something which I have said to him is a bad idea. My children have made up last names on Facebook and so do I.
Autism makes our children more vulnerable than most.
I think that is a smart move on your part. Using blogs for qualitative research purposes maybe is now a popular trend… so kudos to you for thinking ahead, since it’s considered as public record.
I have nicknames for my kids on my blog, and at first I had images that had my kid’s faces – I thought as long as their names were changed then people couldn’t google them, and that was enough. Then a friend of mine asked to pitch our story to a news program and I said that I didn’t think my daughter would be comfortable with that becausee of privacy issues. My friend responded by telling me that if I was sso concerned about privacy I might want to reconsider the images I had up. So I went through and I removed any image that showed my kid’s faces straight on. I was sad to do it because I don’t want the blog to appear as stories that I’m secretly revealing, but actually ashamed of. So I guess my question to you is – what makes you comfortable leaving those pictures up of your kids? Are you ever concerned about that?
On a side note I will tell you that I adore your blog, and you inspired me to write my own. My daughter and I have watched all your youtube uploads and you guys make us smile. Brooke helps my Bean to see that autism can look just like her sometimes, which is sometimes as important as seeing the differences.
So thank you.
I’ve struggled with it too, especially since that whole ‘I am adam Lanza’s mother’ debacle.
But I am fairly certain that it’s obvious that everything that I write is respectful of my children and, while I reveal a lot, that I am keeping what should be private private.
In the end, though, I think that it’s the three dimensional people – the beautiful faces that look just like anyone else’s beautiful faced kids, that make our story relatable to some who might not otherwise be bothered – who might find it easier to dismiss it without the ‘no, we really are real people who look startlingly like you’ aspect. And then there’s this ..
“Brooke helps my Bean to see that autism can look just like her sometimes, which is sometimes as important as seeing the differences.
So thank you.”
And that is priceless.
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I use my real first name, my real last name is a bit of an open secret. My family members are only referred to as “insert relation,” with little detail given beyond that unless they tell me it’s OK to do more. But I can make the decision for myself on what to share of myself, and your kids are not you. (On a related note, I already know my policy for when I have kids. Their existence, approximate ages, and maybe small incidents that do not reveal neurology is all that will be blogged unless and until they consent.)
Hi Jess, thank you for your candor and for sharing your experience with us. I am an RDI Consultant in NY and your writing has helped me to understand parents and children on a whole new level. Thank you for sharing thw importance of acceptance and respect. It is a message that is not expressed nearly enough. I am a parent of 2 NT children; if I am half the parent you are, half of the time, I would be grateful. The girls are blessed to have you.
Oh my gosh, thank you, Laura!
Likewise. My kids are Mary, Will, and Patty on the blog.
Honestly this never occurred to me. I don’t have a significant following, but maybe I should change my kids names and our location.
I’m not sure if you will see this, as obviously this is an old post. But I am a College Student in Michigan, majoring in Psychology and specializing in disability studies. I’ve done a lot of work with Autism and plan to continue it. I wanted to start a blog for my adventures. I’m just curious how you got started and if you had any advice on how I should get started or pursue this? I value your opinion as you are an amazing writer and I admire your blog a great deal. Thank you!
oh gosh, thanks .. huge question to which i don’t have time to do justice right now, but given how often it’s asked, i might just write it all out into a post one of these days. i’ll try; promise!
I was wondering if you ever did write out a post regarding how you got started. I, too, am starting a website (more of a resource site for families with special needs kiddos) and am having some difficulty beginning the writings-portion (blog, homepage info, etc). I’ve been following you for a few months as well and really appreciate your insight. Hugs to your wonderful fam!
Hi, you are extremely right. I feel so lucky I bumped into your page. Will do this right away!
I completely agree – good decision. I blog about life as the mom of a child on the spectrum, and after the first couple of posts I went back and changed my children’s names to nicknames. I only use side or back shots of the kids. Hopefullyl it doesn’t seem to impersonal to readers but I figure you can’t be too careful.
I agree with this desicion. While you have a say in how much you reveal about yourself, your children currently have no such right, legally speaking. So for you to decide that you will render them anonymous until they are of age is deeply respectful towards them, IMHO.
I just wanted to thank you for your posts and blog. As a mother, I find that it isn’t just our children who struggle to fit into the boxes that society prescribes for them, but us as well. Mothers (and I’m sure fathers, too) struggle and argue about parenting methods (co-sleeping, bottle feeding,…), life choices (stay at home, work, do both,…), and finding our own identities when things have changed so much from our days before children. So it’s wonderful to see your encouragement of your family and daughters. Instead of merely helping Brooke to fit into the right box, you are suggesting that perhaps there is no box. For any of us. Instead we are all people living the best way we know how and being true to ourselves. And throughout it all there is love. And that begets hope. Which is absolutely essential to everything.
So thank you!
I’m a new follower to Diary of a Mom. 🙂 I recently learned that our little boy (age 5) was on the autism spectrum. I have gotten a lot of “i’m sorry” “Oh how do you deal with him”… etc. Anyway reading your posts have been helpful, and have inspired me to start my own fb page called “Welcome to my world”. It’s nothing big… just a place I can share things! Can I ask you a question? Katie isn’t on the spectrum right? Just Brooke? I’ve been following her balloon skills!! 🙂 Anyway thanks for sharing all your thoughts and ideas!!!
Just Brooke. Katie is typically developing. ;). Good luck with the page!
I never knew those weren’t their real names! Katie seems so much like me in many ways, I’m 16 now! I have many autistic family members. You handle everything well. I hope to be such a good mom someday, and that my kids are that awesome!
Thanks so much, Kamiryn, so glad you’re here.
But you didn’t answer the question. Why Brook and Katie?
Nope, I didn’t. 🙂
How did you come to choose “Katie” and “Brooke”… Did the girls have any input?
Not telling. 😉 And they didn’t. If I were doing it now, they absolutely would.
Thought maybe some of your Oklahoma readers might like this!
Warren Theatres proudly offers Sensory Sensitive shows for families affected by autism or other disabilities at the 21st Street Warren Theatre Tulsa, the Moore Warren Theatre and the Broken Arrow Warren Theatre. These shows will run on the big screen with brighter house lights and softer volume, and audience members are welcome to dance, sing, shout, talk, etc.
Normal ticket prices apply, and tickets can only be purchased at the 21st St Warren Theatre Ticket Office, the Moore Warren Theatre Ticket Office or the Broken Arrow Warren Theatre Ticket Office starting the Wednesday before the scheduled show.
Future shows and dates will continually be posted on this page, check back for updates!
Sensory Sensitive Show for June, 2015″Inside Out” at 11:30am on Saturday, June 20th.
Sensory Sensitive Show for July, 2015″Minions” at 11:30am on Saturday, July 11th.
thank you. feel free to share it on the facebook page where folks can see it. 🙂
Hi there. I just wanted to tell you that I have been following you on FB for about a year or two. I read everything you write. I do not comment on most. My child is not autistic but you have given me so much within your writings. My world has opened up so much because of you and I just wanted to thank you for that!
I think it’s a good idea to use pseudonyms for your children. I’m not so concerned with general privacy, because if don’t think it exists anymore. I do think it is good to be respectful of your soon to be young adult children. I think their personal details should be theirs to share on their terms. We are not ashamed of our autism, it helps make us who we are and we are pretty matter of fact about it in person.
So is your name really Jess?
Personally, I think Katie is a great name. I happen to be a Katie myself (and a major Harry Potter fan)! Do the girls like their web names? My youngest has a mild form of autism, and I was wondering what kind of genetic testing you had done with Brooke and how important you feel it is. Also, I absolutely love your page, and your girls are awesome!
The only genetic testing we’ve done is cancer screening 😉 and the girls are fine with their names. Were I to do it again, I’d have them pick their own, but they do have meaning to them.
I have composed an email I tried sending to you in reference to the possibility of Brookes real name in a post of yours, but it won’t allow me to send it! Please email me so I can let you know about it! Thank you!!!
If it’s the Facebook post, I fixed it. ;). If it’s something else, please just let me know which post and I’ll check it. Thank you so much for looking out for my girl!!!!
Hi there – in reading a past post …. Just thought I’d pass it along! 🙂
changed em. Thank you!!!!!
Wasn’t sure where the best place to leave this comment was. I wanted to tell you that I was at Brooke’s chorus concert last week! (my sister is in the band). Brooke looked awesome giving a little blurb about the song in her pink accessories! 🙂
My sister was also telling me she sees Brooke around the hallways, and often hears her telling jokes or saying “polka dot”. From everything I’ve read, sounds like your girl! 🙂
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Hi, Jess. [text deleted]
I know her real name is not Brooke, but I thought you would like to see this product that is so Booke! And even has her name in the title. https://www.francescas.com/product/brooke-spiral-hair-coil-set.do?sortby=ourPicksAscend&page=2&refType=&from=fn&ecList=7&ecCategory=103175
Jess, are my last two comments in your preview queue, or did they not get through at all? I’m asking to find out if I have to fix something (my browser settings?) or just wait.
They’re in the preview. Thanks for the effort on this. I have to get to them. One wasn’t an issue – Courtney was the name of the therapist, not anyone in the family. But otherwise I’m just behind in addressing them. I can’t do it from my phone, and with everything going on right now I haven’t gotten to my laptop in a week.
Hi Jess. I think Katie’s real name is in some of the comments of “when the floodgates open” from March 2009. I realize that reading that far back in the blog chronology is probably creepy, so I apologize for that. I was attempting to understand the NT side of the NT-autistic sibling dynamic.
I think you are very sensible giving your daughters fake names; however aren’t you concerned about having their photos online? You could still keep a blog but with no pictures.
Can you be certain someone who knows you in reality won’t put their real names online?
Not to mention the Dark Net?!
Maybe I am overcautious (as I am in reality)
I tried to PM you, but you don’t seem to have that feature enabled. Is it possible to PM you?
Unfortunately no. I do try to read all of the comments on FB though. If you prefer to leave a comment unattached to your name, you’re welcome to leave a comment anonymously on the community resource page here on the blog. Hope that helps!