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

Cry E P

Ever heard of an IEP? I hadn’t either. But when your child turns three, if there is concern about developmental delay, the school system puts them through additional assessments and determines the types of therapy they qualify for. I gotta say, I am really thankful for an educational system that foots the bill for therapy at this stage. (Incidentally, my state is more than $20 billion in debt, but this is when I thank my dysfunctional Golden State for its concern for the least of these.)

Anyway, from what I’ve heard, the IEP is never easy. In my experience, this is because it’s never easy to drive out to a school you’ve never been to and sit in a child’s sized plastic chair for two hours and listen to people you don’t know tell you about all the things that your baby boy doesn’t do right.

There’s not a single mention of the way he holds your face at night after you’ve read your eight millionth rendition of Goodnight Moon. Or the way he climbs into your lap at the dinner table with the sole purpose to charm you so you’ll quit trying to get him to eat. Or the way he uses his little voice to say two of his very few words and ask, “What Mama?” when even his tiny soul can tell that the day has become too much for your tired heart.

But the IEP is not about strengths. It is about needs. Special needs.

Before our IEP, we were feeling really good about the progress Henry’s making. Because he’s making really good progress. But the optimistic moments of a hopeful parent do not equal the critical and necessary eye of educators. And I’m not saying they’re always right, and I’m not saying they always focus on what’s really important, and I’m not saying they really know my son.

But they know what he needs to be ready for school. They know he can’t sit right, that he’s not coming close to holding a crayon correctly, and Lord knows he’s not talking enough.

It’s not easy to get in the car after the IEP and let the tears well up on the way home, and it’s not easy to start dinner and try to remember everything and explain to your husband what they said and why it hurt and why they’re right. It’s not easy to feel like anything other than a failed parenting experiment when you subsequently lose the IEP paperwork for a week or two.

But then, oh then. Then, you miraculously find the paperwork, you rearrange everything to get him to three classes a week for speech and occupational therapy, and the teachers gush about his sweet nature and praise his strong progress. He comes home with art projects and starts to say r’s. You pray for his brain, his mouth, his hands every night. That they would be strong, that they would work.

Then, one night, after the weather’s gotten cooler and the days have shortened, you put on Chopin. You look over and see him lost in the beauty. Eyes closed, head and arms moving slowly and in perfect time. They don’t put that in an IEP. But that’s what he is. And he’s yours.

*This post originally appeared on Sensory Processing Disorder Foundation blog November, 2010

Since the First Year

So, Henry's dad is a real find. The day we met he was handsome and kind and smart as a whip. Moments into our first conversation, I ended up blustering something about justice and winning an argument. Not much has changed.

The year Henry was born was a hard one. You might guess that a child that screams for the better part of 12 months would be hard on a marriage. You’d be right. It’s actually a little bit like being tortured. And when you’re tortured, you can be convinced to do horrible things to people you love. Like forget how handsome, kind, and smart they are. And you bluster something about justice and win an argument because “I don’t DESERVE this!”

I’ve learned a little bit since that year. First of all, discussions of justice are best left to grad school and the U.N. Secondly, the screaming can get better. Henry’s occupational therapy helped tremendously toward a more peaceful life for all of us. Lastly, I’m pretty sure that the way you treat the people in your home might just be the most important thing you do in this life.

No one would be surprised to hear that a toddler with SPD has tired parents who don’t have a lot of carefree weekends in Tahiti. But here’s the super special secret about being married to someone who raises a kid who has never said his own name or eaten a meal the size of which would be appropriate for a small rodent; He GETS it.

People who love the same things often have an instant connection and understanding. Henry’s dad knows me perfectly because we love the same difficult, beautiful, complex, and screaming little boy. So we keep trying. To know and be known. To love and be loved. Everything else is just blustering.

[This post was originally written for SPD Foundation blog]

A Little Bit Perfect

The other day, I found myself saying something unbelievable as I explained SPD to a new friend. It went something like this, "You know, it's actually a little bit hard to identify Henry's particular symptoms these days." WHAT??!?

Some folks asked me how the first day of preschool went. I'd say it was a little bit perfect. There were no tears at drop-off- Oh wait, that's not true, I was crying a river and spontaneously hugged a kind looking stranger woman who was walking past. Henry met a friend whose name he can pronounce perfectly and is excited to go back tomorrow. The teacher's only concern was that he hadn't eaten snack-Ha! Get used to it.

We are living in a parallel universe lately, where a little boy that lives in our house speaks a language that sounds a little bit like English, knows other children who he plays with, and even takes baths. See the photo above entitled Hey, I'll Try Anything To Get This Kid Clean. That night, it took wearing a winter hat for him to be happy in the tub. No problem.

I'm the type who believes in God. And I know a lot of people who asked God to help Henry out. For some reason, it's a little bit hard to believe that maybe we're over the worst of it. And maybe we're not (believe me, I'm no happy clappy everything's victorious and don't you know we're all going to be fine type of God believer, although I guess if you've ever read this blog, you know that by now).

But tonight, as I look at Henry falling asleep, I have this teary idea that he is absolutely perfect. And I'm going to go ahead and say thanks either way. Thanks for making him a little bit less afraid. A little bit less alone. Thanks for giving me this little boy. The one who says something that sounds a little bit like I love you. And I ask myself, don't you know we're all going to be fine?

Letter to Henry on the first day of preschool

It's not easy to let you go into the world. I've spent a lot of time protecting you, explaining you, sadly sometimes hiding you away in a safer place. But it seems that today is the day you start a bit of your journey without me.

Let me start by saying that you make this world richer and fuller. Sometimes I feel like you're my heart walking around on this planet. That every one of your bumps and bruises hits me full in the chest and every one of your struggles drags me out of bed and sends me to work in the quarry without enough sleep, head throbbing with more than enough wine. But what would I be without a bruised heart? Not full. Not human.

Let me also tell you that you have an enviable heart. It moves with all you have, with equal parts love and fury. But your spirit is infectious, and people are drawn to you, and you are loved. Don't hesitate to share yourself with others. I echo what your sister advised last night. "If someone says hello, say hello back." Even if you can't say your L's yet.

Let me end by saying that you are exactly as you were meant to be. That every bit of you was designed with purpose, with intent, and with grace. That your bumps and bruises and struggles are part of your story, and that until I belong to the ages, I will undoubtedly be here after each one.

We are yours.

Love, mama