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.

Must. Be. Barefoot.

Birthday love overflows

You know that expression "warms the heart"? This Saturday I experienced that phenomenon firsthand. My heart was overflowing with affection and appreciation. It was like a nice brandy going down slowly, and I'm still feeling that glow.

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.

Birdwings

Eagle at Greenlake this spring

Birdwings

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

I dare you

It's time for some challenge.

I've noticed that I've been more hermit-like in the past months, keeping at home to avoid the struggle and embarrassment that is going out with an unpredictable child. I haven't taken Soren to the grocery store in a year (yay Amazon Fresh delivery); I do errands when Soren is at school or in therapy; I know where all the drive-through Starbucks are.

For our boy, stores can be overwhelming, with new sounds, sights, and people. And oh, the wide open spaces! Soren just can't pass up an opportunity to run--away. I've had more than one episode of chasing Soren through the pharmacy just in time to prevent him from running out the front door. Scary stuff.

Can you guess whose challenges these are?

• One of us feels especially embarrassed by standing out in public
• One of us hates to have his hands held
• One of us likes to lie down in stores as a way of regaining some control
• One of us is fine with screaming in public when encountering new situations
• One of us is too big to fit in grocery carts (okay, make that two of us)
• One of us needs to be bribed with a drink to get through a quick errand (again, perhaps that's two of us)
• One of us is feeling increased guilt about not living life in the open

So, this is the summer. The summer that Soren and I will bite the bullet and do the hard things that make us part of a community. We have a right to be out and visible in our neighborhood and city. Even if we stand out. Even if we feel awkward. Even if we need to practice this getting-out skill.

So here's a short list of our challenge targets. I'd like to tackle at least one a week.

• Coffee shop
• Grocery store
• Ferry trip
• Water playground in north Seattle
• U-pick berry farm
• Farmers' market
• Ice cream place
• Neighborhood dive bar (just checking to see if you're still awake)

What about you? Can you think of a summer adventure that will require some bravery, some confidence on your part? I'd love some compatriots on this journey.

Onward!

Nora

“Above all, be the heroine of your life, not the victim.”

   – Nora Ephron, 1941-2012

Swimming vacation

We're in re-entry mode here as we come back after a lovely mini-vacation in Chelan with Erik's family. We rented a house with a (heated) pool, and I bet you can guess where we were most of the time.

Soren and his cousins (five boys five and under!) were little fish the whole time. It's great seeing Soren in the water--it's really a great equalizer for kids. He's pretty much fearless in the water now; he can float, put his face in, open his eyes under the water, kick, and jump (er, belly flop). Now we just need to teach him some actual swimming moves like paddling so we can take off his life preserver.

Fish-eye view

Soren lounging with cousin Matt

Aunt Jenny with cousins Jerry and Will

Happy!

As a special gift to his parents, Soren slept through the night each night there. I think it's a combination of lots of sunshine and lots of swimming (as in, hours and hours every day). Poor kid is probably pretty disappointed in our Seattle home this week.