To Candice, With Much Gratitude & Love…

I love my son fiercely, but I have always understood when someone indicated babysitting him was not for them. Always. But I also cannot get around what it has been like to experience how infrequently we were able to find that kind of assistance…it is, like everything else, not something I wish to be pitied for and would never want to see anyone feel badly about, but it has nonetheless been deeply impactful on my life for the past few years.

Perhaps someday I will talk more specifically about the depth of that, but for now I’d rather focus on the lights of hope currently in my life, and my friend Candice from church has been a ray of that for several months now. She came to our house to watch Tony nearly every week for months starting this past August, covering a rather embarrassing number of visits to my dentist to repair 5 plus years of damage. And when I came back, our little man was happy, and she always had a smile with something positive to say about him.

But more cherished by me then just her watching Tony, was how much she cared about his comfort and feelings. Candice came over for a couple of visits first so that he could get comfortable around her while I was there. I found out recently that she had downloaded a text to talk app so that she could answer his speech device requests with tech of her own just to make him laugh. I can’t even say how much it means to me that she cared enough about my son’s feelings to do that, to have her see him as a someone to be loved and not just a “chore” or another service project. Candice, I love you…and what you have done has meant more to me then you will ever know.

Some Reading To Consider:

Carly’s Voice: Breaking Through Autism, by Arthur and Carly Fleischmann

A number of years before Tony was diagnosed with Autism, I remember seeing ABC coverage of the remarkable young heroine of this book. As I heard her story, I remembered thinking, this makes perfect sense. Of course non-verbal individuals with Autism have an inner voice, their brains are just wired differently, and I remember thinking that knowing this, if any child of mine was similarly diagnosed, I would just need to find a way to help that voice emerge. At that point in time, I never suspected how much that revelation would come to mean to me.

This book details the emergence of Carly’s ability to communicate her perceptions and vibrant wit, and is available from many sources (I am sure you know by now where I didn’t buy it from), and I highly recommend it. A fair bit of this book is written by Arthur giving his perspective on their journey, with increasing contributions from Carly herself scattered throughout. This on some levels I imagine mirrored the evolution of Carly’s communications with her family as she typed out her thoughts. No matter what is going wrong in our son’s world, I have seen the “spark” in his eye, and I feel certain some day he is going to have more to say as well.

The Diving Bell and the Butterfly, by Jean-Dominique Bauby

This is a remarkable, but short, book recommended to me many months ago by the Fabulous Miss Whitney, who I greatly respect and admire, so naturally I read it right away 🙂 The author painstakingly wrote this one blink at a time to affirm each letter of every word after suffering a debilitating stroke. He awoke from this stroke mostly paralyzed with what is called “locked-in syndrome.” I consider this to be a must read for anyone who knows a non-verbal individual, regardless of the cause- it is a glorious affirmation that one does not need to produce a single sound to communicate with great eloquence and insight.