Tag Archives: Bloggers

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

Trouble Awaits if I Forget

I began this blog almost three years ago as a document of my daughter.  At that time I knew nothing about advocacy, I knew only one Autistic adult though I’d read the works of the most famous Autistic people ~ Donna Williams and Temple Grandin.  I assumed there were few Autistic adults because I believed what I was being told, that autism was an epidemic, and I feared it mightily.  I had a few people, made up of close friends and family members, who began to read what I wrote.  This blog was a place for me to write about how I felt and, while I tried to keep my feelings to a minimum and reported lots of dialogue and any progress I saw, I did write occasionally about how sad, angry, frustrated, scared and yes,  sorry for myself I was.  I never once considered how Emma might feel about what I was writing because Emma barely spoke, didn’t read (as far as I knew) and the idea of “presuming competence” was one I’d never heard spoken, let alone considered.  Regardless, I tried to stay upbeat.  I grew up in a WASPY enough environment to believe it was unbecoming to air one’s dirty laundry.  In addition, I believed and still do, in the power of positive thinking.  I wanted to feel hopeful, even though, it seemed to be in short supply.

As time went on and more people found this blog I continued to write about our life.  I understood that having an Autistic child made what I wrote more interesting than had I been writing about a neurotypcial child.  I never thought of it as an “opportunity” but I was certainly aware that I was being given a platform I might not have otherwise had.  I wrote a number of posts where I agonized about what it was to be the parent of such a child.  I saw nothing wrong with my thinking.  *Those posts have since been removed.  I do not post any photos or quotes without explicit permission.*  Had anyone said to me then – can you understand that your daughter’s neurology is not “good” or “bad”, that Autism in and of itself cannot and should not be judged as a deficit, with those whose neurology is in the majority held up as good and enviable, I might have been able to hear them.  But no one did say that.  No one said anything remotely like that to me.  Ever.  Not. Once.

Had someone patiently explained the concept of “presume competence” and exactly why it was so important would I have been able to hear them?  Had someone explained the relationship between depression, lack of self-esteem, how ALL children, whether they are verbal or not, whether they appear to understand or not, internalize what is said and thought of them, I probably would have understood.  I might have even felt the surge of hope I was so desperate for and that I felt so many years later when someone actually did take the time to patiently explain these concepts.  If someone went on to describe the problematic and ultimately destructive issues related to functioning labels I might have been able to comprehend, not right away, but I would certainly have found those concepts intriguing and would have wanted to know more.  Would these ideas have been enough to change the trajectory we found ourselves on?   I like to think the answer is yes.  I am just grateful, enough Autistic people took the time and energy to explain to me when they did.   These concepts are the basis for everything I do and think regarding Autism and my daughter.

Just a year ago, when I began to read the blogs of Autistics who were in their early 20’s, 30’s, 40’s and *gasp* 50’s my understanding changed radically and rapidly.  I started to see that if I wanted a personal place to vent I could do so in a support group or in a personal journal, but that what I wrote about on a public blog or submitted to the Huffington Post was reaching far more than just a few family members and close friends.  Things were easily misunderstood, my intentions were mistaken, the message I was sending was misconstrued.  Slowly, slowly over time I began to realize just how skewed public perception was and how that perception was affecting public policy, the media, where money was being spent.  I heard repeatedly how public perception played out in people’s lives.  I became aware of how pervasive the inequality and injustice was and remains and I became determined to speak out about it.  This was no longer just about my hopes and dreams for my children.  This was about human rights being blatantly ignored.

And yet, all of this is tricky.  There’s a huge danger of being seduced by one’s own ego.  When either of my children become boosters for my self worth and ego I know problems will arise.  When being a parent of an autistic child gives me a platform that I otherwise would not have available to me, I need to acknowledge that. Regardless of whether I asked for it, intended or even wanted that platform, I have to respect its presence.  When being the parent of an autistic child becomes my identity, I know I’ve drifted away from where I need to be.  My Autistic child is not “who” I am.  That’s putting way too much pressure on any child, and it sets up an unhealthy and untenable relationship.  Trouble certainly awaits me if I forget that.

A Peek at the Hudson River taken from the Highline

The Hudson River

Imagine What it is Like to be Autistic

The last 72 hours has seen a whirlwind of activity regarding the Autism Positivity 2012 Flash Blog and those words “I wish I didn’t have Aspergers.”  It has been incredible to witness.  To recap  –  A group of bloggers devoted days of their time and energy to come up with and create the Autism Positivity Flash Blog.  They then reached out to all the bloggers they knew, asking for each to contribute something.  New contributions were posted every 15 minutes on the last day of April, with more trickling in after that. I don’t know what the total ended up being, but it was well over 115 contributions.  As a result of their efforts, a whole community of Autistics, Aspergers, Parents of Autistics and Parents of Aspergers were galvanized and inspired to come together in support of any Autist who has ever felt – marginalized, less than, misunderstood, ignored or alone – even if for only a minute.  It was an incredible show of strength in numbers, of people working together, of a diverse and vibrant community uniting and reaching out to another (anonymous) human being.

Yesterday, Genisa, the person who typed those words commented on the piece I’d submitted to Huffington Post.   Because the Huffington Post limits comments to 250 words, you have to break your comment down into segments and submit each segment, hoping they’ll be published in the order you submitted.  As both Genisa and I found out, this was not what actually occurred.  HuffPo moderates all comments that come in and because of the massive numbers of comments they are (I’m sure) quickly overwhelmed with content they cannot keep up with.  So Part 2 of my 3-part response was never published at all, and part 5 of Genisa’s comment wasn’t either.  It was incredibly frustrating and I felt somewhat horrified when I realized that people were going to read just the last part of a very personal comment and one which made me feel incredibly vulnerable to misinterpretation that I’d written in response to Genisa’s.  About four hours later the first part of my comment was eventually published, which still did little to mitigate my frustration.  (Someone on Facebook suggested those lost comments end up with all those random single socks that somehow never make it into the light of day between the washing machine and dryer.  I kind of love that!)

Genisa wrote in frustration – “I am noticing a pattern here. They are only posting the first and last of cont. posting. I had to post 6 posts to get all of what I wanted to say out. How can anyone understand what I said if all they post is the beginning and end of what I was trying to say? It is leaving out all of the details, the important stuff. This is how it is every day living with Aspergers. I tend to not ever get the whole message people try to tell me, because I am so focused on the details. But when most of it is left out, I just don’t get any of it.”

“This is how it is every day living with Aspergers.”  The analogy being drawn between the frustration of not fully getting everything someone is saying, whole chunks of  what is being said are erased, and trying to make sense of it all anyway, while being expected to respond was so powerful to me.  I thought –  What if it was this way when you tried to express yourself as well?  What if you had a whole idea, something you wanted to relate to another person, but then had to submit it (say it) in short segments, yet it came out scrambled and not in the right order with some of what you wanted to say not coming out at all?  What if this was your constant experience in attempting to communicate with others?  Imagine if every time you had a conversation with someone this was your experience in both receiving information and giving?  Imagine how incredibly frustrating that would be.  Imagine if this happened not once, when you could shrug it off knowing that it was a one time annoyance and while irritating not an ongoing problem, but each and every time you spoke.  Imagine that your experience of communicating was to have people routinely misunderstand you or respond to the last part of what you’d said without hearing or understanding the first part.  Imagine if when people spoke to you, you lost portions of what they were saying.  Imagine what it would be like to ask them to repeat themselves and have them lose their patience with you.  Imagine if you were scolded, ridiculed, called names and punished for not giving an appropriate response.  Just imagine how that would make you feel.

Can you imagine?

For my latest piece in the Huffington Post, click ‘here
 Anyone can contribute!  To be a part of the change, contribute to the Autism Positivity Blog click ‘here