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.
"Let's go downstairs"
"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.
Wednesday, July 11, 2012
Soren's birthday celebration was Saturday, and he loved it. I mean really loved it. He was giddy the whole afternoon. And I know that the reason he was happy was that his very favorite people were there (immediate family) and they all made a point to really connect with him on his preferred level. You should have seen the tickle fests and tree climbing and cuddling and book-reading. You should have seen that boy giggle and practically purr with delight.
I was worried that he'd be overwhelmed, weepy, asking to play on the iPad, or staying inside by himself. Instead, he was making gestures to engage with adults; he hovered around cousins riding trikes and playing on the slip-and-slide, definitely interested in the action. Of course we made some concessions for our guy: we let him go at the appetizers without monitoring (it's his birthday!), and I'm sure he ate a whole bag of chips. We gave him a little alone time to watch a movie inside. And we skipped presents and cake (too much production) in favor of a round of "Happy Birthday" and ice cream cones. Soren was in his glory. And I'm pretty sure his pure joy rubbed off on everyone there.
I can't tell you what this meant to me. For one, knowing that we can find ways to really reach Soren and help him feel our love is so very hopeful for me. And two, I just love that others love my child. It's as simple as that, and I know that sentiment is not limited only to special-needs kids. Everything feels right with the world when others can see the beauty that is our children, a beauty that we parents--all parents--sometimes worry is seen only by us.
So to our family, I say: You made Soren's day. It was flawless. And you are still warming this mama's heart.
Monday, July 9, 2012
Eagle at Greenlake this spring
Your grief for what you've lost lifts a mirror
up to where you're bravely working.
Expecting the worst, you look, and instead,
here's the joyful face you've been wanting to see.
Your hand opens and closes and opens and closes.
If it were always a fist or always stretched open,
you would be paralyzed.
Your deepest presence is in every small contracting and expanding,
the two as beautifully balanced and coordinated as birdwings.
--Rumi, translated by Coleman Barks