About

I have been blogging here since 2008. It began as a means to work through my quest of finding a viable, reliable, sustainable communication method for my son, who was deaf, non-verbal, and also had multiple severe disabilities. While the quest itself was unsuccessful, I found something else: community.

Owen died October 24 2010, at the age of 12. Readers at the time may remember that it was a complete surprise – he died quite unexpectedly and for reasons that are still unknown. If you wish to follow the path of this blog – and by virtue of that, Owen’s life – you might want to look through this page, which holds the entire archive.

I published No Ordinary Boy almost exactly one year after Owen died. I am asked sometimes if writing the book was cathartic. I suppose it contributed in its own way to my grief process, but in truth the writing may have actually kept me from attending to the depths of my loss. What has turned out to be more cathartic is meeting readers and engaging in conversation on this blog and on others I read. Our personal narratives are so important for connection and learning – something our healthcare system doesn’t seem to naturally support.

In the spring of 2012, I spent a few months promoting No Ordinary Boy and speaking to many different groups of clinicians, educators, parents and ethicists. I told the story of my journey with Owen so many times I felt myself disconnecting from the details of both our lives. So I shifted my focus and instead spoke about the issues of decision-making, and how we, as new parents, are often ill-equipped to make decisions of immense consequence to our children and our future selves. I also spoke of the pressures imposed by society in general, and healthcare in particular, to treat disability as disease. I find these topics invigorating and intend to keep exploring them through writing and dialogue.

I love connecting with readers and hearing your stories. By being out in the world and telling parents they are not alone, I am learning that I am not alone either. Please connect if you feel so inclined – leave a note on the blog, send me a message or come say hello if I’m appearing somewhere. Thanks for stopping by!

One Comment

  1. I attended a PWAC author event where you were one of the speakers. I bought your book not only because I enjoyed your talk but because I also have a son with developmental disabilities. My book about him, Finding Matthew, (A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit), was published last November. My publicist found your site and this reminded me that I’d wanted to connect with you.
    At the event, you touched on the decision making processes that we as parents and advocates are faced with. I particularly remember when you decided that it was not critical to constantly “teach” Owen; that it was okay for him to be himself and do things he enjoyed. This was very powerful for me and brought me back to my struggles to try and get Matthew to live life by my standards.
    Now that I’ve found your blog, I’ll be following you. Would love to hear from you, Sue.

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