The Eight-Year Journey for the ‘b’ and ‘p’ Sounds

August 31, 2014

For the last eight years, we’ve worked to help our J-Man learn to say the ‘b’ and ‘p’ sounds. For most of those years, it’s sounded like this mixture of a glottal stop and a fake swallow combined, his lips and teeth open. In other words, about as opposite from an actual ‘b’ or ‘p’ […]

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The Screams

August 26, 2014

In the J-Man’s classroom when a child is upset or overwhelmed, they may begin to scream. Perhaps they scream in frustration, anger, terror, or confusion. Perhaps they have no words except to scream. It may come out as a shriek, a brief and shrill alarm, a cacophonous string of high notes, or a bloodcurdling and […]

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“Is love available even here?”

June 24, 2014

A wise friend of mine has this tattooed on her wrist. It reminds her of one of the most fundamental questions we must ask ourselves when life goes to pieces and hope seems so far away.  This question has come to me often in our many hours in the pediatric oncology clinic. Of all the […]

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When It Falls Apart

May 2, 2014

It has been a long time since I’ve written anything. Life for us has turned into a never-ending series of challenges, challenges unlike any we’ve ever faced. As some of you know, I was hospitalized in Michigan right before Christmas for almost two weeks in an intensive program to try to cure my 24/7 migraines. […]

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An Open Letter to Autism Speaks

November 17, 2013

[note: This is in response to the recent statement issued by Autism Speaks.] Dear Autism Speaks: My child is not missing. He is right here. I just put him to bed a few minutes ago. Nighttime is one of our most precious times together. I sing his favorite songs and say our ‘nighttime words’. Some […]

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