Monday, July 30, 2012


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.


  1. Oh Jenny, I ache for you. I can't possibly know how excruciating this must be. I remember Soren as a charming, wonderful kid. I have no doubt he is still charming and wonderful, even in silence.

  2. I wish there was something I could do to make you feel better and lighten your load, and it is heartbreaking not to be able to do that. I can't imagine your similar feelings about not being able to make Soren better. He is really lucky to have you and to be loved so much by you.

  3. I would like to echo Susan's comment -- Soren is lucky and blessed to have you. He is lucky to have such a committed and loving parent; one who can overcome her intense sadness and sense of loss in order to be there for him.

    I want you to know that we (your family) can do that for you. We can overcome to be there for you. Please ask anything from us -- we will come through for you!

  4. What a painful post to have to write to give us a glimpse of what your family is going through. I was struck by one of your early posts about being transparent and again here. "A mom who doesn't know the heartbreak that's coming."

  5. We love you and that cherubic boy. Your blog often gives me tears, insight, and joy for the simple things. It always leaves me in awe.



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