Category Archives: Blogging

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

The Result of Trauma

Recently someone commented on this blog, misconstruing a comment made by someone else, attacked that person, made accusations and as I was trying to remember how to block the person from making further inflammatory comments, they managed to write four more focussed entirely on me.   Each comment was more accusatory and hate filled than the next, and though they didn’t get through moderation, I saw them before deleting and successfully blocking the person and their various aliases.  And yet it made me sad to have to block them.

After years of blogging I have learned there is no use responding to such comments, because when someone has made the decision that you are hateful, and untrustworthy, really anything said will be taken as yet another example of what they’ve decided is true and reinforcing whatever it is this person believes.  Ironically, this is what happens to anyone who has been objectified, not treated as an equal or even a human being with respect and dignity, but rather has come to represent something larger than any single person can possibly be.

I have also learned that it is better to remove the offending comments than to allow them, as they do not lead to useful, productive discussion, but instead end up creating a mosh pit of anger and resentment, which can be far-reaching, upsetting and triggering to a great many, as opposed to just the one or two the original comments were directed to.

When a person has been traumatized repeatedly throughout their childhood, made to feel inadequate, told they are inferior, treated cruelly, belittled and teased mercilessly, they grow up believing, at least a little, that they deserved such abuse.  It also is common for that person to then become hyper vigilant of the same sort of cruelty being played out throughout their life with other people. It is a means of survival, as well as a way to protect themselves from more trauma.

For children especially, who’ve experienced on-going trauma, the tendency can be to see this same kind of abusive behavior that they grew up with, in others now that they are older.  Sometimes they may be correct and people really are being abusive, but other times their reaction will be incorrect.  People who wish them no harm, people who even care about them, will be viewed as abusive too, in keeping with all those people who hurt them in the past.  The original trauma will be replayed over and over leading to an unending cycle of trauma, reaction and trauma.

I’m not saying anything new here, you can read about PTSD, trauma and the result of systematic abuse over long periods of time by doing a little research yourself…

The point is, when we as a society, condemn a population of people, whether that is because of skin color, gender, neurology, sexual preference or anything else, we are doing long-term damage.  Damage that will result in an increase in addiction, depression, suicidal ideation, nightmares, anxiety, irritability, anger, difficulties forming close bonds with others and general feelings of isolation are a few of the symptoms documented.

Abuse is like that.  It has long tentacles, reaching out over decades and even entire lives, causing those who have been victimized to respond to others who wish them no harm, as though they were.

There is no easy answer, but if there is a single word that can be used, which will certainly not do more harm, it is love.  I know it sounds trite, too simple and clichéd, but  I believe it is the only answer.  As Emma wrote recently after reading a New York Times article about the ongoing fight for control of a vital highway in Afghanistan, “War is useless for making peace.”  Love has always been the answer.  Even if others cannot hear it, cannot believe it, cannot feel it, those of us who can, must be even more determined and vigilant.  Love.  Embracing those who are in pain, embracing those who are hurting, even and especially when they strike out.  And while we do that, we must protect ourselves and those who need our protection from any who are intent on hurting us with strong boundaries and the help and protection of others.  It’s a tricky balancing act and definitely something I am working on, but I am confident it can be done.

Love

Love

A Few Thoughts…

I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago.  A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to.  Everything about our environment was different, but there was something else too.  Something I can’t completely explain because I haven’t figured it all out yet.  Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives.  These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe.  I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.

Em and I traveled to a place that was created, organized and for Autistic people.  I took Emma because I wanted her to experience being in a place where her neurology was in the majority.  I wanted her to meet others who are more like her than not.  Em has not commented on our time away other than to say she had fun.  I, however, have a great many thoughts and feelings about being in such a place.  And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology.  But there is always a danger in making such a statement.  I have been accused of “sugar-coating” autism.  I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is.  Some people have written that by accepting I am giving up.  They equate acceptance with resignation and doing nothing.  Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.

People have written me that they want to hear about the hardship, the difficult times, the pain…  they wonder at my decision NOT to talk about that.  To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here.  There are countless blogs that do that far better than I ever could, even if I wanted to.  I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life.  And by the way, I did that well before I had an Autistic child.  I am more than capable of seeing the world as a dark and miserable place.  I don’t need a great deal of encouragement to go there.  Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery.  I have no desire to return to that mindset.

I am interested in hope.  I am interested in both being the recipient of and the giver of hope.   Hope gives me energy.  I feel invigorated by it.  When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness.  When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss.  When my daughter reads something and makes a comment about what she’s just read I am euphoric.  When she tries something new, I am cheering her on.  None of this erases the moments of pain.  None of this means everything is simple or easy or that there are never moments of sadness or difficulty.

I will and do write about my own challenges, not because of my children, but because of who I am.  Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness.  My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.

“Type three colors,” I said this morning.

“…Violet, slate blue and red,”  Emma typed.

I’m in awe.

Emma’s ever-changing “string”

Em's String

Blogging

It’s always interesting to get attacked by someone you’ve never met.  All the more so when they write about how “narcissistic” I am, while talking about themselves and bolstering themselves up in comparison.  They use this blog, link to it, as a spring-board to talk about themselves.  They talk about how they are such a “bad autism mom” because they do not do whatever it is they perceive me to be doing, while at the same time congratulating themselves.  All of this they say with a liberal dose of sarcasm and “eye rolling”.  How easy it is to criticize everyone else.  How easy it is to sit on one’s little self-made throne of superiority, picking apart other people’s lives, while avoiding looking at one’s own.  It’s so much more fun to sit in judgment of everyone else.

There are so many blogs out there, written by all kinds of people about all kinds of things.  Why choose to talk about the blogs you don’t like?  Why not talk about the ones you do.  This blog isn’t for everyone.  If you don’t like what I write about, you don’t like what I say, you don’t agree, then comment, start a conversation, have the guts to say something here, directly to me, or don’t, and go find another of the tens of thousands of blogs out there.  But devote an entire post to all that I’ve written that pisses you off while calling me names, meanwhile using the cloak of anonymity?  Seriously?  Why do that?

I always find it interesting that the meanest comments (and by “mean” I do not mean those who disagree, I mean, nasty, sarcastic and those who resort to name calling) almost always come from people who do not use their real names.  I understand many people choose to use other names to protect themselves and those they write about, I understand that many do so for good and well thought out reasons, but there are others who do so because they say awful things about other people, things they would not have the courage to say to the person’s face while hiding behind their safety net of anonymity.

I have a lot of ambivalence about this blog.  I always have.  I love that my daughter says she’d like to write things to post on here.  I look forward to the day when this blog becomes hers, or we decide to shut it down and she begins her own, if that’s what she would prefer.  I do not post photos of her without her permission.  I do not quote her without her permission.  I try to write honestly.  I write about what I know.  I write about what I think about.  I write about the mistakes I’ve made and continue to make.  I try to write with a certain degree of self-reflection.  I write about what I’m learning.  I’ve written about my past, my childhood, addiction, career, passions.  I try to keep the focus on “my side of the street.”  Often that’s not easy.  It would be far easier to write about everyone else, a running critique of everyone else’s poor behavior, but doing that is not the person I want to be.  I have worked hard these last two decades of my life to be and behave differently.  My default mode of being in this world does not serve me or others.  Being self-involved, a victim, blaming my bad behavior on others, doesn’t help me.  What do I learn from that? How is any of that going to improve anything?  I can’t control other people.  The only thing I have any control over is my response and my actions.  I try hard to not get into judging and condemning others.  I try.  I’m not perfect.

I do what I can to live a life with purpose.  Some people are going to disagree, some people won’t like the way I write.  Some people will decide they “know” me and don’t like what they think they know.  They will find fault.  That’s okay.  But don’t come here and use this blog as a spring-board to talk about how superior you are because you “don’t do” what I am doing.  Don’t twist my words around, take them out of context to bolster yourself up.  Go get some help.  There are lots of people who specialize in helping people with issues of self-esteem.  You want to have more self-confidence?  You want to deal with your insecurities?  Trust me bashing, judging, criticizing others isn’t going to give you what you’re looking for.  You want to complain about me and what I seem to represent to you, go for it.  But have the guts to do it to my face or at least do it here, while using your real name.  Don’t link to this blog from yours.  I don’t need nor do I want the traffic that is generated from your words.

Autism Positivity & a New Blog ~ Where Art & Life Meet

Tomorrow is the Autism Positivity 2013 Flashblog event!  Anyone can make a contribution, whether you have a blog or not.  ANYONE!  Just follow the instructions on the link above and submit your word document, post, photo, poem or whatever you’d like.

cropped-autismpositivitybanner3

When I began Emma’s Hope Book just over three years ago, I did it because it seemed logical.  We wanted a document, a place to write notes, a place we could write our observations that extended family could read if they wanted.  Like those annual letters some people send out, updating family and friends about what’s happening in their and their children’s lives, this would be a place Richard and I could write about our daughter.  Never did it occur to me to ask our daughter what she thought, or consider how she might feel about having her childhood and life dissected for anyone to see who might stumble upon this blog. 1) I didn’t understand yet that she might be able to understand what a blog was, let alone able to read it, and 2) that she might have an opinion about it one way of another.

I cannot actually express how horrible it makes me feel to realize how wrong I was with not just the assumptions I made about my daughter, but the decisions I made and how I behaved as a direct result of those assumptions.  As horrible as it makes me feel, I have wondered and begun to ask her how it has made her feel.  My daughter surprises me consistently and constantly.  She shows me that what I think I know is usually incorrect.  She has countered my worries with her love of performing, her desire to be heard, her wish that people would listen to her.  (This is important and not remotely the same as my writing here about my thoughts and feelings.)  But I’m only now beginning to fully understand all of this.  And I cling, desperately at times, to the idea that at least I am beginning to “get it” now.  At least I have the chance to do things differently.  At least I have the opportunity to respect her, to ask her, to listen to her, to honor her and not assume she doesn’t understand just because she doesn’t look directly at me, nod her head and say some version of, “Yes, Mommy, I understand what you’re saying and this is what I think and believe about what you’ve just said.”

So no.  I didn’t know when I began this blog and I never once stopped to consider how it might feel to her to have her mother writing about her as I have, as I do.   But I am and I continue to, though now with her permission, and as I do, I cycle through the feelings of discomfort and I also know that writing is something I must do.  It isn’t a choice.  It’s what I do.  Hence the creation of my new blog ~ Where Art & Life Meet.  A second blog!  A blog about life, marriage, parenting, art, design and everything in between.  This morning I published the first post for it.  Please go over and say hello.  It’s more of an image friendly blog, a kind of blog meets Pinterest format and if you like it, I hope you’ll follow it. header-title