Tag Archives: blogs

The Messiness of Blogging

Years ago I wrote about the difficulties involved in writing a balanced and yet honest depiction of life.  I just reread that post and my first response was to delete it.  But as I no longer do things on this blog without asking Emma, I asked her if she wanted me to remove it and others like it.  She wrote, “no.”  So I’m leaving it, though, for the record, if this were left entirely up to me, I would delete it, along with a great many others where I detail personal things about my daughter without thinking about how she might feel having such information made public.  To be honest, I would delete the first two and a half years of this blog, just wipe the slate clean and begin with the spring of 2012 when I began to become aware of Autistic people who were writing about their lives.  But this blog is not mine alone.  This blog is a group blog, written by three people, one of whom has their name featured on it, Emma.  (Emma has said she likes the name of the blog and does not want it changed.)

A blog is a curated version of life.  We tell what we are comfortable discussing, what we are aware of and understand at the time of writing.  But when writing about others, particularly family members, things get trickier.  Even a year ago I wrote things I am not comfortable with, but as Emma wrote a few weeks ago, “it’s important to show that times were difficult.  It is still not easy at all times.”  Emma wrote this regarding another project, but when I asked her if her statement applied to this blog too, she wrote, “Yes.”  

My dilemma in continuing to contribute to this blog concerns that difficult balancing act of writing about the things I am learning, processing and thinking about, while being respectful of other members of my family and not writing in a way that suggests I speak for them.  Even so, I am not always successful.  But more and more there’s a great deal I don’t write about.  If Emma is going through something that causes her pain, I no longer feel comfortable writing about it, even from my perspective unless she asks me to.  I argue that a certain amount of self censorship, particularly when done to protect the confidences and security of others, is not necessarily a bad thing.

The only time I’ve posted things that are personal and painful are when Emma has written, “Put this on the blog.”  Or when I’ve asked her, “What do you want to talk about?” And her response was, “I want to write a blog post.”  But these omissions, this version of life that I do feel comfortable enough to discuss here, cannot, by their very nature, give a true picture of our lives.  So for some, it may seem our lives are ideal, or some readers may mistakenly think we never struggle, or perhaps these posts give the impression that we live a pain-free life of nothing but joy and ease.

Blogging is an intimate and immediate form of writing.  Those of us who blog are far more available to those who read what we write than other people who write. Anyone can make comments and most bloggers, even those who do not or rarely respond to comments, read what commenters have to say.  It is part of what makes blogging unique, and to me anyway, particularly compelling and interesting.  Comments from others, whether they agree or not, are fascinating, often thought-provoking and some even make me reconsider what I believe or how I think about something.

Blogging is the reality TV version of writing.  But even so, there is more left on the editing room floor than gets seen.  It is the nature of the beast.  Life is far too complex and messy, particularly when it is four lives or five, if one counts our mischievous kitty, to capture in 800 words or less, even when posting Monday through Friday.

WhiteWaterRafting copy

Ido Kedar’s Blog and Emma’s Response

I’ve written about Ido and his book and blog, both entitled Ido in Autismland, before, ‘here‘, ‘here‘, and ‘here,’ but want to devote today’s post to Ido’s latest blog post because Emma and I read his post this morning and Emma added some of her own thoughts to what Ido wrote.

Ido begins by talking about having just finished up his junior year at a non special education high school.  (I originally wrote “regular,” but then amended that because I no longer know what any of these words even mean, much less how derogatory they sound.)  Ido then addresses parents and then professionals and finally ends the post with a few encouraging words to other Autistic non-speakers.

After Emma and I read his post, I asked Emma what she thought.  She wrote, “I thought it was decidedly helpful to read Ido’s writing.  He tells strong truths lived.  Teaching wasted talkers about life not run on word fuel.”

“Word fuel.”  Can we just take a moment to fully appreciate that?  “Teaching wasted talkers about life not run on word fuel.”  There’s more, so I will disregard my urge to just end this post with that.

I asked Emma if she had anything she wanted to add to the paragraph he addresses to parents.  Emma wrote, “Parents – you must address your fears and doubts first, and then have caring words of encouragement for all word thinkers.”

I then asked for her thoughts on the paragraph addressed to “professionals”.  Emma wrote, “Teaching tedium does nothing, but water down ideas.  Lethargy is the lesson learned.”

Lethargy is the lesson learned.

Ido ends his post with a few words directed to Autistics like him.  Emma then wrote, “Work today, knowing each day pleases the necessary work of tomorrow.  Having hope, and loving, believing parents will make work easier.”

"Talkers"

“Talkers”

Creating a Community

Oddly enough I was planning to write a post about commenting on blogs and comments in general.  Just as I was sitting down to begin the post, I received an email telling me one of the blogs I follow had a new post.  The post was entitled – For Ariane and Those Who Lie Awake At Night.

A little backtracking is in order – about a week ago during another late night blog surfing session (finding blogs related to autism has become nothing short of obsessive – who says the apple doesn’t fall far from the tree?) I found a blog, Life and Ink.  The writer is a mom whose autistic son is now a young man.  Since she began the blog last fall it was easy to read all her posts, which I did.  As I did, I wrote a comment on one particularly moving post and then she answered and I kept reading and read this:

“And with that said dear reader, if YOU need help, if YOU are overwhelmed, contact me. Talk to me. Let me or another parent who has been there listen and help you. If we pooled our resources and decades of experience just think of the difference we can make for each other and for our children.

Now that makes me happy.”

When I read that, I was in the middle of trying to put the series of autistic writers together for the Huffington Post and I was writing the introduction to the series.  I thought about what Charlotte had written and it inspired me to write a hypothetical conversation:

“What if, instead of receiving that memorable phone call when Emma was first diagnosed, I received a call that went something like this:

“Your daughter has been diagnosed with autism.”

“Excuse me?”

“Let me give you a list of blogs and people you can call who have been where you are now. I think you’ll find them invaluable. These are parents whose children are autistic and autistic adults who are happy to speak with you. They will help you help your child.”

When the HuffPo piece was published I commented on Life and Ink telling her that she had inspired me to write that.  We then wrote back and forth and now she’s written the post that I’ve added the link to.  In that post she writes (in response to something I’d written earlier about lying awake in the middle of the night and listening to “the voice” – “The voice knows once you share what it has said it will lose its potency, its grip on you. And that is why talking to people about what you are feeling, what it is saying, is so important. That is why these blogs are so important.”

I don’t know if any of this makes sense to everyone reading this, but each comment I receive on Emma’s Hope Book is like a little gift.  Each time I comment on someone else’s blog and they reply, it’s the same.  A little gift wrapped up in words to savor.

On this most recent Huffington Post piece an autist wrote – “I have this feeling we’ll both soldier on.”  I loved that he wrote “we” because the truth is “we” will.  We will soldier on… together.  (As Emma would say.)

So to all of you who have commented – thank you.  And to all who haven’t, but think about doing so, DO!  It’s wonderful and I promise you, I’ll respond.  I promise.

For more on Emma’s journey through a childhood of autism and ours, go to:  Emma’s Hope Book