The 1%

In the last few weeks, we’ve heard a lot about “the 1%”, referring to the wealthiest among us in America. The confident men and clever women among us who have risen to the top.

I was recently reminded of another 1%. Last year, Henry scored in the 1st percentile for expressive speech. At 3, he could barely put two words together and no one but his father, sister, and I could decipher any of it.

So what happens when a family with a long line of confident men and clever women meets a child who seems born from another age and another world. A world where all the tests are not assuredly passed. Where all the lines aren’t colored neatly within. A somehow softer, richer, deeper world.

They are at first baffled, later intrigued, and finally, romanced. Like a respectable woman of decades past witnessing a modern art exhibit for the first time.

She stands before the canvas as her upright and proper voice narrates: This doesn’t fit here. This doesn’t suit my understanding of how things work at all. It’s quite inconvenient to tell you the truth. But…it is actually almost pretty…if you look at it in a certain kind of way. She leans her head slowly as her eyes sharpen their focus. Yes, I can see it. It’s quite beautiful, really.

I was beyond baffled when I first saw Henry’s canvas. I was upright and proper and angry. For the first two years, he didn’t fit here. He didn’t suit my understanding of how things work at all. It was quite inconvenient to tell you the truth. But-

Henry turned four this weekend. He recently scored in the 50th percentile in speech. For us, a birthday is an opulent occasion to praise the canvas. Through meltdowns and food refusals and not being potty trained and still wanting to sleep in my bed and too loud, too bright, too much - I manage to be completely romanced.

Henry romances us with a je ne sais quoi that comes from his softer, richer, deeper world. And I am confident he would not be all that he is without his history of “multiple misarticulations involving numerous phonological processes”.

The artist has something extraordinary in mind, even if I don’t get it. So here’s to gazing at the messy masterpiece. Happy Birthday, buddy.

A version of this post originally appeared on the Sensory Processing Disorder Foundation blog, October, 2011

Preschool Poet

It's been a while. One year ago my boy wouldn't touch water, couldn't chew or say more than a few words. He had never hugged a friend or even had a friend like the sweet one in this picture.

18 months since starting therapy. 9 months since starting preschool. 6 months since I first heard I love you.

And we find ourselves here. At that place where something broken catches refracted light and moves into lose your breath beauty.

For a long while, I fixated on wanting to hear Henry say I love you. More than just worrying about his speech, I wondered if he would ever feel love. Would his neurons ever give him enough peace to notice? Could he forget for one second that his physical world was bombarding him with anxiety to focus on another person?

The extravagant truth is that Henry has become a Petrarch of the preschool set. He won't stop telling us how much he loves us. He says it a hundred times a day. He tells you he'd love you on a sunny day or a rainy day. He yells it from his room across the house. He says he loves your eyes.

Lately, being Henry's mom is like listening to a violinist on the streets of Venice. I know the pigeons are dirty and occasionally I think the whole city is crumbling into the sea, but can you even believe this moment?

I'm guessing this kid is going to have his heart broken a thousand times in large and small ways. Here's to hoping all those pieces get gathered up to refract light into something beautiful.

Oprah and SPD

Last month, Oprah featured a segment on a violent child who was diagnosed with sensory integration disorder. I was thrilled when I heard that Oprah had mentioned sensory issues! However, the impression was given that SPD is an inherently violent and uncontrollable disorder. SPD Foundation is asking folks to write Oprah and to request a more full picture of what SPD affects children and what can be done to help. Mine is below-it's truncated due to character limit. You know me, I'd usually be much more verbose.
If you're interested in writing, get instructions here.

Oprah, I am a parent of a child with SPD. While Zach, profiled on your show, was diagnosed with sensory integration disorder, it’s important that people know that SPD is not an inherently violent disorder. The way my son Henry experiences the world makes textures, light, and sound painful and confusing. While that poses daily frustrations (It’s too bright! That’s too cold!), it has created a beautiful depth in him to feel music in his bones and seek affection in a soft arm or smooth hair. Henry turned 2 after a year of inconsolable crying, refusal to eat, and inability to speak. A friend suggested The Out of Sync Child, a book that changed our lives allowing me to finally understand my child. After spending 5 weeks of intensive occupational therapy at the preeminent center for SPD research (STAR Center), my son began a miraculous transformation. Before therapy, Henry couldn’t bathe because he couldn’t stand the feel of water on his skin. He couldn’t eat because he didn’t like the smell, look, or texture of food. He couldn’t be in a crowded place because he couldn’t tell where someone else’s body was compared to his own. It has not been easy, but Henry now takes baths, socializes at preschool successfully, and has an incredible amount of affection and gentleness toward his family. Oprah, I’m so thankful that you mentioned sensory integration disorder on your show. Please consider letting your viewers know more about SPD and what can be done to help. HenryinParticular@blogspot.com