except my name

*

Judge: I want you to be very sure about this. This means you’re gonna walk out of here with absolutely nothing.

Tina Turner: Except my name. I’ll give up all that other stuff, but only if I get to keep my name. I’ve worked hard for it, your honor.

~ Tina Turner leaving Ike in What’s Love Got to Do with It

*

“If you do decide to start your own blog, my one piece of advice would be to avoid using your name.”

~ a letter to a friend who was considering starting a blog

*

There are a million and one reasons why I wish I hadn’t put my name on my blog. http://www.jessxxxxxx.wordpress.com. Really? I mean, really? What the hell was I thinking? Or not thinking? I’d tried for http://www.diaryofamom.wordpress.com but it was taken. Next stop – full disclosure.

When I started Diary, I hadn’t the faintest idea of what I was getting myself into. I knew about as much about blogs as I did about semi-conductors or the Permian Period of the Paleozoic Era – pretty much nothing.

At the time that it all began, a dear cousin of mine had been seeking to adopt a child. It was a long, difficult, emotional process that led dolts like me who knew nothing about it to ask to a lot of oversimplified questions like, ‘Hey, any progress?”

No doubt out of the exhaustion born of constantly answering the same ignorant questions from friends and family time and again, she started a blog. Through her web page, she was able to update us all in one shot. She would write about the latest developments, pontificate a bit on the challenges of the journey and in the process educate and sensitize all of us. I can promise you that no one who ever read her (beautifully crafted) words will ever again say, “They have four children – two adopted and two of their own.” I was grateful for the education.

One day, I found myself gnawing on an article I’d read. I chewed on it for weeks, but it just wouldn’t let me go. The article blamed the skyrocketing numbers of autism diagnoses on its hypothesis that many parents actually seek the label even when it may not be appropriate. Why? Well, according to the article because it opens the door to services – especially in the public schools, that might not otherwise be accessible.

Despite the fact that I couldn’t shake the article, I couldn’t remember where I’d read it. It killed me that I couldn’t send in a scathing letter to the editor. I had a couple of choice labels for HIM (or her). But I realized that just because I didn’t know where to send it didn’t mean I couldn’t write it. And so I did.

“As the parents of an autistic child,” I wrote, “we spend so much time trying to digest the label, understand the label, avoid the label – trying to get over, around, and through the label, to God-willing find a way to some day no longer meet the criteria for the label. The label represents everything we don’t want for our children.”

(ed note .. I have since chosen to change my language to person-first, but back then I still used ‘autistic’ rather than ‘with autism’.)

The next time I logged onto my cousin’s blog I noticed the invitation. There it was, clear as day -

‘Start your own blog on WordPress today.’

It made perfect sense to me. I would publish my letter in a place that would allow me to send it in one fell swoop to all my friends and family. Perhaps they would gain a better understanding of where we were coming from when we talked about our struggles with labeling *Brooke. Perhaps I could answer some of their questions all at once.

And so I put out my little shingle that day and opened shop on a quiet corner of the Internet, never thinking twice about using my name to do it.

After a week like this last one, that small detail is a glaring gaffe. I have so very much to write this week. So much that gnaws at me – much like the article that prompted my very first post. So much to share from our experience that I think could benefit so many of you out there in the ether. So much to purge from my system – the toxic doubt and the abject terror that drove me through the haze this week. I want it out. So much love, so much hope – the stories of so many good people who climbed into the mix with us and who leaned right into the wind. So much to say about the friendship that was forged in the fire – the one that had been here all along. So much to celebrate tempered by so much more yet to be done.

I could take out all the details, I suppose. I could write cryptic, round-about references and dance around the heart of the story. But if you’ve been here for a while, you know that’s just not the way that I write.

A gentleman contacted me yesterday about syndicating Diary. I wasn’t even sure what that meant. I’m actually still not sure what that means. We chatted back and forth via e-mail for a while. “We’re really only interested in your posts about autism,” he said. “We wouldn’t post give-aways etc.” I had to laugh. “I’m not a give-away kinda gal,” I wrote back, “Every day I give my heart and my stories; those are really the only things to ‘win’ on Diary.”

So I can’t tell half a story. It’s just not who I am.

I do hope that at some point I can find a way to synthesize some of the lessons we learned this week and share them. They are valuable to me, and I’m pretty sure they are universal. The most personal stuff usually is.

But in the meantime, I’ll have to find another outlet to process and purge and celebrate and lament. Because unfortunately, it just can’t happen on a blog that bears my name.

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29 thoughts on “except my name

  1. I’ve gone back and forth on this very issue. But, I’ll tell you what I’ve come to realize: using my name on the blog has forced me to be more mindful, to take greater care with my words, to be respectful not only of my child, but of the people he interacts with (even though I don’t always think those people deserve respect).

    When I first started blogging, my blog was completely anonymous. But I got sidetracked by a situation at school and the blog became the place where I vented my frustration. And then I started asking myself–are these the words I want people to remember me by? I closed up shop on that blog and made a deliberate choice to move forward in a different way.

    Yes, there are often times when I wish I could blog something; wish I could put a story out there. But, I’m not sorry I made the change. Sometimes the most most personal stuff, needs to be processed and distilled and given time. I bet that once you’ve done that, you’ll find a way to share what you’ve learned, to write what you can’t write now.

    In the meantime, sending hugs and thanks that long ago you made that choice to start blogging in the first place. And, congrats on the syndication!!

  2. i know this is such a terrible issue, for a variety of reasons. i used to do a different blog…i didn’t use my name, but it was much more unfiltered…way, way TMI. and i think it crossed that threshold, where i wasn’t comfortable with the level of openness happening, so i had to take the whole thing start. “incipient turvy” is the second version, the do-over. so i definitely understand…openness is great, but it can get into uncomfortable territory.

    and there’s a post i never put up because it’s an unpleasant topic. i need to just do it, since it relates to anonymity. but i did…years ago, when i was in high school…have a fairly serious stalker situation. the way that young people on the spectrum are so vulnerable to whackos…awful topic, but i know how hard this is for you, just the act of posting, being open…it’s like every single word, you have to scrutinize it, think about how people respond. blogging…serious stuff, intense.

  3. I started out anonymous. Me, my son’s name. I definitely did not want to identify us. I was concerned with protecting my son, protecting his health info, protecting his future, and concerned that it was his lifestory to tell or not to tell. But then I changed my mind: so many people who can share this journey with us and will support us.

    But some things? I just don’t post. Some things take time to post. Some things won’t be posted. ((Hugs))

  4. I so wish that the world could be more accepting of your honesty. It’s such a shame that you have to feel that your must censor yourself and your stories.

    I love you!

    Mom

  5. I think blogs can be very effective while still protecting the privacy of the writer and their children. Mama Edge is very good at this as are many other bloggers. One such blog, MOM-NOS is a good example. She writes extensively about herself and her son and his autism yet does so completely anonymously. No pictures of him, no names and no clue as to where they reside. I don’t feel it takes away from her stories or points at all.
    I completely disagree with posting pictures of children on blogs. What is the point? It is just wrong IMO and there are just too many weirdos out there in the world that it would make me sick knowing they had access to my children’s images. Anyway, I do not think one has to tell everything about their personal life in order to be an effective blogger.

  6. http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=152092750&blogId=274333738

    Here’s exactly why I would never post any personal information or children’s pictures online. If you have ever listened to police lectures on internet safety, child safety, etc. they always tell parents not to post their children’s information on line. I know they even tell parents NOT to publish their child’s birth announcements in the paper or put up signs on their front lawn’s announcing a new arrival (e.g. “It’s A Girl/Boy” balloons).

    To “Mom”, it has nothing to do with people not accepting honesty but has everything to do with being smart and safe in a crazy world. Some people may consider it paranoid and over the top, but I would trust the advice of law enforcement who deal with the nuts out there everyday. I raise my children to be very cautious. Open the newspaper and read about the sickos out there and the children who are put at risk. Better safe than sorry. Protecting a child’s privacy IS a parent’s responsibility.

  7. Oh No! My name is Brenda–really! :) Many of us need to follow you, so if you decide to do something else, or reappear somewhere else with another “name”–please get our email addresses first so that we can come with you….Your blog is an essential part of many parents’ lives who deal with constant struggles, and the way you celebrate our differences is extraordinary. The BS will fade away….EGBOK!
    Regards,
    What’s-her-name……

    • Ditto what Brenda said. I need to follow you….. My son is much younger than *Brooke so I draw so much inspiration from your experiences and insight. If you decide to blog in cognito take me too :-)

      • Id like to continue reading as well. My son is also younger than *Brooke. By reading your experiences, I have been able to be a better mother. Reading the comments everyone writes has also helped, Ive received many tips! I completely understand your dilemma though.

  8. I just found you! Your insights are so inspiring to me as I walk this journey with my precious granddaughter. I hope I can find you again when you leave this venue.

  9. all – thank you so much for your kind and incredibly heartening words. i didn’t mean to imply that i intended to shut down diary. i may well look for a way to take my name off of it – which may be as simple as changing the url as kate suggested – or linking it to another venue that will ultimately spin off on its own.

    though i’ve had concerns for a long time about using my name (and the girls’ names), i do think, as i said in a recent comment, that there is significant value in being raised in an environment that makes it obvious to a child that there is not only absolutely no shame in talking about our challenges as well as our victories, but actually tremendous strength.

    i think there is an important message therefore in our LACK of anonymity – we are proud of who we are.

    i will continue to post here until i find a solution. i promise not to ride off into the sunset though – much as some of you out there might like to, you just can’t get rid of me that easily. :)

  10. I started my blog anonymously using “D” for Diego and “L” for Lyric…but I didn’t think that this fostered a connection with the reader. Same goes for pictures. There are no last names. Jess had I not found your blog, I promise you two things: I would never had started a blog (which has been great therapy for me and might possibly help someone else later)and I would feel so alone. Your blog was the first I had ever read about “autism” and has opened a world of moms just like me!! I thank God for all of the mommy bloggers and I am thankful that everyday you decide to share so much with us. There are some things I won’t write on my blog, but I try to be as honest as possible. There will always be weirdos and awful people out there, I am cautious, but I chose not to let them silence me or keep me from potentially helping others.

  11. Jess, I am pretty sure you can change the name of your blog and the URL. At least if it is anything like Blogger you can. I once changed the title and the URL of my Blogger blog and was still able to keep all the old posts. Why don’t you see if you can do the same thing on WordPress?

  12. I totally understand if you need to “close up shop” and start over anonymously, but I’m with Brenda (#7), please email us your new site. I look so forward to you stories, and the sense of community here.

  13. Jess,
    Just wanted to tell you how wonderful your blog is. Yours is one of the first blogs that I came across when my son was first diagnosed. Your posts have helped me to view Noah’s diagnosis more positively and given me the courage to begin my own blog about Noah.

    I’m with everyone else in understanding the possible need to “close up shop”, but I would truly miss reading your wonderful posts and hearing about your amazing daughters.

  14. Thank you so much for all you have shared. Follow your instincts, you have very well honed ones. You have given countless readers hope, courage, and inspiration, you have made a difference, you have touched hearts. This is great, important work. It does not matter if you ‘go underground’. Your legacy here has been priceless. And I will be forver thankful to have found you when I did. All the best with what comes next.

  15. I’ve been having this debate with my blog lately – I even went through the effort of changing my son’s name in every freaking post. But it felt unnatural and forced, so I changed his name back again in every freaking post, and just made sure there’s no trace of our last name or location on the blog. In a few years, I may choose to password-protect the blog, so my son will have more control over who has access to the potentially-embarrassing details of his childhood.

  16. I understand this as I started my blog mainly as a way to update my far away family and friends about him and our lives. It was tough to answer the same questions over and over. I don’t use his name but his pictures are present – we only see family 2 times a year at the most, they want to see him!

    I do now have to censor myself and sometimes write posts that will forever sit in my dashboard, but I’ve made peace with that.

    I hope you find peace with whatever you choose to do.

    I LOVE your blog and think you are a fantastic writer!

  17. No matter what you do you will always be known because you stand out like a light in a dark place. The people in your community and your schools already know, love,and respect, you.
    While there will always be detractors there will also be staunch supporters. Leadership is a risk you take to make a difference and you, Jessica, always make a difference. I have always found that it felt better to “deal” with the detractors without changing my agenda, for to do so means that they have won.
    So many people get so very much from you. They also feed your growth, just as your babies and their struggles make you stronger and better.
    Do what you think is best for you and yours but first beat the wolves back.
    Love you,
    Dad

  18. I only occasionally comment on your blog, but read it regularly and admire and am moved by your writing. Selfishly, I would love to keep hearing about your family’s experiences…but putting it all out there for the world to read clearly has a downside.

    So listen to your instincts and do what feels right for you and your family. Meanwhile, whether it be by blogging or some other outlet, I hope you are finding a way to purge the dark feelings that are shadowing you this week. Wishing you comfort and peace.

  19. Oh, wow. I can’t tell you how many times I’ve struggled with what to share on my blog and have always been in awe of your bare honesty and courage to do so under your own name. It clearly has downsides, and it sounds like you’re struggling with some this week, but I think your dad is right — you are a light in a dark place for so many. No matter what solution you come up with, sounds like you’ll have a legion of readers follow you, including this one!

  20. I started off the same as you. I really just didn’t learn about blogging before I started blogging. Would I change things? I don’t know. I think there is a certain amount of credibility that goes with using your name.

    In the end, I just trust in the Lord, that He will protect us. And if he chooses not to protect us, then it will be for His purpose and His glory.

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