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

13 responses to “Creating a Community

  1. I read yours, then hers, and I am crying. This ….this sharing, this commenting, this exposure to other parents, autists….has helped me in ways I am not sure I can communicate in words. I know that voice…. the voice and I meet in the darkest hours, in the oddest moments of my days and nights. but your blog and the connection to different voices has changed me in so many ways for the good. It is wonderful, and I thank you, my friend. Kelly

  2. When I was writing this I thought of you, Kelly. And Liz and Becky and E. and Charlotte, Kirsten, outrunning, Granma and Barli and all who have commented or replied to comments, you have helped me and changed me. Our community of people – autists, neuro-typical, with children and without, I do understand, I know exactly what you mean. It is how I feel too. XX

  3. So sweet of you to mention me! 🙂 I honestly can not remember now how it was that I stumbled upon your blog! I am just so grateful every day that I did! 🙂 I too, like Life And Ink, sometimes have the fear that my comments will offend someone. It still keeps me from posting on a lot of blogs. I normally don’t disagree with any of them per se but I am so scared what I am thinking won’t really come out written well etc….I love that blogs have opened this door for us to realize that there are others out there that we can lean on, laugh with, share with. I can’t imagine the isolation parents must have felt pre-internet days! When Brett was first being diagnosed, researching and reading groups/blogs is the ONLY thing that kept me sane. My husband and family pretty much wanted to pretend it wasn’t happening and those individuals I connected with on the internet were my only life line. It really continues to be as they are REALLY the only ones that “get” it! 🙂 It has helped me to help Brett with so many issues whether it is biomedical or behavioral……people have been so willing to help and some have without even having realized it just because they were willing to write it down! So, Ariane, I cherish you and Richard for taking time, pretty much everyday, to let us be part of your lives. Even the parts that don’t have anything to do with autism necessarily. Just to see and hear about your family as a whole makes me feel that yes, we will soldier on together!!! 🙂 Blessings!

  4. Ariane,
    We meet once again in the comments section and let me say how very glad I am to be here. I loved your post, of course. I love its message, the message of unity and community. Just noticed that as I typed the words, it is interesting to see that you can’t have community without unity. I chuckled too as I read Becky’s comment about what it must have been like to be in the autism world pre-internet. As members of the club since 1995, I can personally say how isolating it was before blogs and perhaps it is memories of that deep sense of aloneness that fuels my desire to reach out and share. You, Ariane, by simply reaching out to me through our blogs have enrichened my life. Thank you and keep up your good work. 🙂

  5. Kelly – I can so relate to that fear of offending. I worry about that too. Often if someone doesn’t answer, I worry that I’ve offended them somehow. Until I started commenting on other people’s blogs, I didn’t realize how that felt. To comment and not receive a reply. It felt like going up to someone at a party, saying “Hi!” and having them turn their back and walk away. Or maybe like entering someone’s home who left the door open, yelling out “hi!” only to hear them moving around upstairs, but not responding. I don’t know something like that… Anyway, I love your comments and hearing about your experiences with Brett.

  6. Charlotte! (Didn’t see your comment until just now as we’ve been traveling all day.)
    The idea of pre-interent… When Em was diagnosed the internet was alive and well, but I wasn’t aware of any blogs written by parents or autists, so it may as well have been pre-internet for me. I felt very alone, spent the bulk of my time trying to find the latest research and treatment options. It was a dark time. So glad you have begun your own blog, Charlotte. I have a million questions for you, which I will ask on your – Life and Ink. So glad to have connected!!

  7. Petri Kelottijärvi

    I’m a “he”. But thanks. 🙂

  8. Oh Petri! Thank you for the correction. I’m sorry, it’s not a common name (much like mine) in the U.S. I will correct it on the post. By the way, the next post, which should be coming out any day now on Huffington Post written by Paula Durbin-Westby, is terrific. I’ll include the link on this blog the minute it comes out.

  9. Petri Kelottijärvi

    No worries – nobody here in Sweden knows how to spell my name, anyway – it’s Finnish… 😉

  10. I stumbled on your blog a while back by way of Huffington Post. I love your writing, and find your darling Emma startlingly like me as a child. I am a happy, successful, 58 year old autistic woman. I do not blog, but you can find me on FaceBook. I just wanted to say you and your husband are wonderful parents, and Emma will be fine. She will be wonderful. she is wonderful.

    • Thank you so much for reaching out to me. What a wonderful comment to receive! You have no idea (maybe you do) how much this means to me. I love that you wrote – “I am a happy, successful, 58 year old woman.” Isn’t that what all of us want for our children and, for that matter, for ourselves?! I will be rereading this comment many times when I feel worried or unsure of Emma’s progress. I cannot thank you enough for writing this. Thank you, thank you, thank you.

  11. Pingback: Murder, Fear and Hope | Aspen Post

  12. Pingback: Ariane Zurcher: Autism: Death, Fear and Hope | USA Press

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