our journey of hope and healing through autism

Regressing in to Autism & the dance of grief and joy


“Every parent has had a moment of inattention while shopping.   You think, “Hmm, this dress is cute.  I wonder if they  have it in my size?” and by the time you turn back around, your child is nowhere in sight, having vanished into thin air.  That feeling of mounting terror that claws at your throat as you wildly start calling his or her name-that moment is what it feels like to watch your child disappear into the dark well of autism.  But instead of a few terrible seconds before that little face pops out from behind a rack of sweatpants, the moment of powerlessness and desperation can last for years, or a lifetime.”

-Kristine Barnett, from The Spark: A mothers story of nurturing genius

I have lived that powerlessness, desperation, and fear.  I watched my child’s speech, skills, and sunny disposition disappear, instead replaced with intense sensory issues, screaming,incredible anxiety, and self-inflicted injury.   I fought and clawed with every ounce of my strength, and my child has regained her language skills and is again at peace in her body.  I  find myself forever changed, though.

The memory of the fear and powerlessness I felt lies like an angry scar just below the stream of my thoughts.

For so long, I pushed away the memory of the powerlessness and fear,  and came to the point where I ached constantly.  Through some beautiful guidance from some wise friends, I’ve come to see that “As painful as it may be to face our deepest fears, we do reach the point where it’s more painful not to face them.”

This year, I am determined to lean into the pain of my past experiences, and to own my story.  I understand in the faintest glimmer of a way that grief and joy are part of the same dance, not separate performances. Shall we dance?


6 comments on “Regressing in to Autism & the dance of grief and joy

  1. Mike Kapel
    January 7, 2016

    I think you are super-mom. Occasionally, you may get some dirt on your cape and even run into some bits of kryptonite, but you are doing a good job. I wish that the parents of yesterday had they skills, knowledge and care that you bring to your children. We also, just happen to love you and yours.

  2. Jenny
    January 7, 2016

    I love you and am amazed by you! You are remarkable.

    • holdingtomorrow
      January 8, 2016

      Thank you, Jenny! I love you, too! You’ve always been a wonderful example to me of what it is to be remarkable. Love you!

  3. fit4fifty
    January 8, 2016

    I Iove how you are able to express yourself so well. You are remarkable and I have no doubt you will reach the goals that your heart and soul desire.

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This entry was posted on January 7, 2016 by in Uncategorized.
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