Silence

We have a set of home videos that I just can't bear to watch, let alone post here. They show a cherubic blond boy toddling about, pretending to play the piano, riding his bike, eating cake. And talking. Words, even phrases, almost sentences.

"My bicycle!"
"Let's go downstairs"
"Where going?"
"I a camel look at my hump"
"Let's stay cabin"
"someone else house"
"teacher no hold babies"

And now? After three separate and successively deeper language regressions starting near his third birthday, we rarely hear verbal attempts at all. When sounds are produced, they are unintelligible. Soren is now officially Nonverbal. The thud of that word is almost as heavy as "autistic." It's so cliche to say, but this really is a bad dream. Or a bad movie, a la "Awakenings."

We suspect Soren has a rare disorder called Landau-Kleffner Syndrome (acquired epileptic aphasia), because of the delayed and pronounced regression that's different from classic autism's, and someday I'll write more about that. We're not sure if his receptive language is also impacted, but we do know his receptive language is leagues above expressive language, which makes it all the more heartbreaking: Soren must be aware that he cannot speak like he used to, like we do.

There's an exquisite cruelty to it all, for him and for us. How can things possibly go backwards, even after an autism diagnosis and years of speech therapy? How much more can we all take (ahem, God)? Soren's frustration with his lack of speech seems to make him angry and distant, and our grief is boiling on the surface again. And I've started to dissociate. It's like a different child in those videos, and certainly a different mother behind the camera. A mom who doesn't know the heartbreak that's coming.

There are small hopes. Perhaps medication for this rare syndrome will help at least stem the language regression. And thank goodness for the iPad, which Soren is a pro at using for speech.

I'm surprised I haven't written about this issue yet, because this is the sadness that is propelling me forward these days, making us seek second opinions, try different speech therapy techniques, and generally ruminate all day long about the loss and the fear of more loss. But I needed to get this out to be honest about where we are in this journey.