Wednesday, June 15, 2011

The Perils of Special Needs Blogging

At some point in the past four-plus years of my blogging, I decided to write as if everyone I knew were reading my blog. Now, I know this isn't the case (oh, if only it were), but I think it just makes good sense to not put anything online that I wouldn't say directly to someone's face.

This philosophy has served me well as more and more people that I know in real life have happened upon my blog. Just this past week, it became suddenly clear that a large chunk of the staff that I associate with at my kids' school are aware of my online persona.

I am so thankful that the staff at our school is openminded and supportive, but I am also thankful that I have put real thought into how I blog about my life. There are so many things to consider when you put your life—and your children's lives—online, but I think that there are some issues specific to those who write about their children with special needs.

I think there are several questions you should ask yourself when you are blogging about your family:

How much information will I share? Will I use my kids' real names or pseudonyms? Will I publish identifying information? Will I post photos of my children? Will I use my last name? Am I aware that even if I am very careful, someone who really wanted to show up on my doorstep tomorrow probably could?

In my case: real names; I try not to post identifying information; I'm all about the photos—they're the best parts of my posts; I use my maiden name, which I don't share with my children; and, yes, between IP addresses, domain registration, and information I've written about, you could probably find me with little difficulty (but let's not test that, m'kay?).

Who will my post offend? Now, this doesn't mean, "Don't write things that will offend people," but you should be cognizant of whether your words will upset people and you should be prepared to face the consequences. If you complain on your blog about how a teacher handled a situation at your school and that teacher reads it, there might be negative consequences—even if you are in the right.

If I write this, can my child still grow up to be president? I know it sounds absurd, but I am less concerned about embrassing my kids as teenagers and more concerned that what I write will be a discoverable record that will limit their choices in life. I figure the president litmus test is about as stringent as you can get. If I write about how my toddler wore a stuffed duck head hat for a year, will that stop him from being president? Probably not. If I write about how my teenager kills puppies for fun, will that stop him from being president? Quite possibly. (For the record, my kids have only done one of those things. Guess which one.)

Is my blog ever going to be used against me in court? This is a big one for special needs bloggers. I have a great relationship with my kids' school and don't envision having my personal blog dragged into an IEP meeting or a due process proceeding, but that doesn't mean that things won't change, either at this school or our next one. Life changes quickly and harshly. Things you write in jest now can be used against you in legal proceedings, such as a divorce or an adoption later.

Am I respecting the privacy of people who don't want to be written about or photographed? It's not my desicion to make to put someone's photograph on the internet. I blur, conceal, or crop all non-family people out of my photos, unless I have express permission to publish their image. I have also passed up on many extremely awesome blog posts because the story just wasn't mine to tell. This includes stories that heavily feature other students, teachers, or even relatives. I get to make the decisions about my children because I own them. (Oh, I'm kidding.)

Will this embarrass my child when he is older? Now, I'm going to assume here that my mere existence will probably embarrass my children when they are older, so I figure this is a fuzzy line, to say the least. But words live online forever and even though you can't Google one of my kids' names and come up with my blog, that doesn't mean that their friends won't find it. Special needs kids are already extra vulnerable to bullies and teasing; do I really want to give those bullies fodder with which to hurt my child? Of course not. Therefore, there are definitely topics that I am phasing out of my blogging. Sleeping in a box when you are six? Weird and kinda funny. Bed wetting as a teenager? Bully fodder. Choose your topics wisely.

Will my blog jeopardize my children's safety? Life is dangerous. I am hyper-vigilant about my kids' safety. I don't think I would be less vigilant about my kids' safety if I didn't write about them online. I don't know that I could be more vigilant unless I locked them in my house at all times. Are they more exposed because I blog about them? Absolutely. Are they more likely to be victimized? I don't think so. I could be wrong, but I hope not. Every person who writes about their children has to make this choice for themselves. I have considered this question carefully and have decided that the benefits outweigh the risks.

Well, what are those benefits? Honestly, there are a lot. I could give you a long list and still not cover every reason I am grateful for what blogging has given me. Among them are community, support, knowledge, advocacy and positive awareness, creative expression, and career exposure. Through my blogs and columns and the hard work I have put in to building an audience, I can help spread awareness and acceptance of autism to make the world a little bit better for my autistic son and his peers when they grow up. I am also giving my kids a history of their young lives. I wish I had a chronicle like this from my youth. I would love to be able to read about my parents' lives and how they were whole, complete people, and not just "that lady who brings me the dinner I refuse to eat." Furthermore, it is a love letter to my children. When they grow up and read it, they will see how much I not only loved them, but truly adored them for their quirks, their minds, their personalities, and their delightful whole beings. I think that is an important gift to pass on to a child.

So, have I always followed these rules? Probably not, but I try to. There are times that I have written without thinking. Of course it would be safer to never write publicly about yourself and your child, but there is so much positivity that can come out of online writing that the risks are worth it for me.

There are a lot of special needs bloggers who read Hopeful Parents. I'm curious to know how others deal with these issues and why the risks are—or aren't—worth it for them.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.


  1. Fabulous checklist!
    The question(s) that finally stopped me from going into detail about my son on my blog using the frame of ASD was "Will someone treat my child differently because of what they read?" and the corresponding, "Will my child think differently of himself if he reads this?" Unfortunately, one of the reasons I started blogging in the first place - to show many different sides of autism - is exactly the reason that I've now retreated back into my cocoon. I am afraid of the very stereotypes I was trying to fight. Since he's now at a stage where he probably wouldn't meet criteria, I've turned away from the label when describing my son, even though I really would like to encourage others that their kids can mature as they age, too! Alas, I determined that now that he is older, it is his story to tell, when and if he chooses to do so.

  2. This is such a great point, Kari! I think these questions and their answers totally evolve over time changing the way we blog.

  3. This is such a great post. Good questions to ask ourselves as we write. Or, maybe, after we write but before we hit publish. I know, in my case, I've not written much lately because so much of what I would write about rubs up against some of those very issues you've raised. Potential legal issues with school, personal health information about my child, parts of the story which I don't know if they really are mine to tell anymore. It's been an interesting time at a writing crossroads for me. I'm still not sure which direction I will turn.

  4. This is a wonderful post and I love your touch points. It is such a personal decision, to write about one's family. We too feel the benefits outweigh the risks, but it is something we revisit often at each stage of our childrens' development.

  5. Great post and great points to consider. I started blogging just to chronicle our homeschooling journey and general life. First as a record for myself, for my kids someday and then second for family, friends to keep up with us. I rarely mentioned special needs and when I did it was pretty vague. Partly because we didn't have any official diagnoses, partly because it was just life for us and not something I wanted to share and partly because those reading weren't really interested in hearing about the hard things in our life. Over the past few years, we've come to terms with some things, gotten diagnoses for some and I'm just generally more comfortable sharing. I've seen the community that comes from sharing, and I've known what it's felt like to be on the outside looking in because my lack of sharing meant no one knew we were dealing with some of the same things. In the past year, I've blogged a tiny bit about our struggles. I'm sort of stuck though. Wanting to share, but not wanting my blog to be only about special needs. Wondering through all of the questions you raise here, and some others and teetering on the fence of what to share, what to keep private. I'm still not sure how I'm going to blog. Somehow I can no longer blog just the peachy stuff and neglect that every single day of our life is affected by my children's needs. On the other hand, I have many reservations about putting it all out there...

  6. All terrific points. I used the "will this stop my kid from being president" test too. So far, I think we're good. I hope. I'm also careful about school posts as well knowing that I live in a small town and people talk. the hardest part about sharing has been "will my kid be treated differently because of what I write?" The follow up to that is "Should my kid be treated differently anyway, because he is different." It's the one I'm still struggling with. Thanks for all these great points.

  7. You made some great points - I loved your post
    I have always used the litmus test of - were R to read the blog at 30 how would he feel.
    I hope( inasmuch as one can predict the feelings of another ) he would know how deeply treasured he was and how much we enjoyed being his mum and dad
    My blog gives me community and keeps me reflective about my own life and in that way has a huge impact on how happy my life is
    I also ( and I hope this does not sound pompous ) think that my blog makes mums and dads feel a little bit more positive about raising a special needs child

  8. Not sure my kids can be president as they were born on foreign soil. Hmm. But I always ask myself what would Pudding think as an adult? Not just about blogging, but other decisions I've made for her that are about her. Can I justify my decisions? At the moment, I think so...but as she gets older that may change.