Imperfectly Seeking Help

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I’m more likely these days to celebrate Tariku’s triumphs on this blog than I am to explore our day-to-day challenges. I’m not sure why that is. Maybe the successes are just clamoring louder to be written.

But I got an email the other day from a woman parenting a child who also has Sensory Processing Disorder and PTSD. She told me that she had combed this blog for more about our struggles and had only really found the “everything is so much better” stuff. Better than what? What was it like? Please tell me, she asked.

Things are remarkably different now than they were a few years ago; it’s true. But I don’t mean to misrepresent the situation. Here’s a little snapshot:

T rises from his pillow at 5:30 like a hummingbird who has just smoked methamphetamine. That’s how he rolls all day, until we strong-arm him into bed. He wakes up with approximately one-hundred-and-forty-three questions about cloud formations and tornadoes and Cuba and sharks and death and, and, and… He’s extremely bright and curious and hilarious, but will take almost no direction. Whether it’s baking a cake or doing math or playing a piano concerto, he knows how to do it. His favorite word is no, accompanied by an impressive eye-roll. When he gets over-stimulated, he has no sense of his body in space and very little impulse control. He literally climbs the walls. They have the scuff marks to prove it. He wants to be in control of absolutely everything, including the time and the weather. It’s sort of like living with a cross between Iggy Pop and Fidel Castro.

I love every crazy minute of my son; I truly do. Just the other night we were on the bed together and I was reading while he watched TV. He reached over and took my hand. We held hands like that, while doing our own thing, for the longest time. I swear it was one of the sweetest things that’s happened in my entire life. But I don’t want to mislead you into thinking that he suddenly turned into Shirley Temple overnight.

Much of our life is still spent negotiating therapies and school intervention. Most nights I still wake in a panic at 3am, worried for him.

In fact, this morning I was just on the phone with a new counselor, who offers some innovative therapies. I talked to her about T’s trajectory thus far.

“Did you ever try so-and-so pre-school?” she asked.

“No. We heard about it. We thought about it.”

“That’s too bad. It would have been a really good fit. Their forte is working with extremely bright children with social and emotional challenges. Maybe they could still help you with an after school group. I want you to call them.”

“I…I…I don’t remember why we didn’t. It was so confusing at the time,” is all I managed to stammer.

The rest of the conversation was encouraging. We set up an appointment for an intake. I chirped something about so excited to see what the future holds and then hung up.

I put the phone down and sat, staring at the website of the special needs pre-school he didn’t attend. We’re very happy with our school now, but it looked like it would have indeed been perfect a few years ago. And even though I had already loaded on my mascara for the day, I began to weep.

The essential thing I forgot to do. The thing thing that would have helped him. And I missed it. I failed my child.

Which sends me right down the spiral of… at what am I failing right now that I’ll have to answer for at a therapist’s office in three years?

Scott’s guru guitar teacher showed up at the house as I was in the midst of this. I answered the door and actually cried on his shoulder. I barely know the guy.

He asked me tell him what was going on. So I did.

Have I mentioned I barely know this guy?

I can’t imagine what Scott was thinking. It was truly bizarro of me. But sometimes you gotta just be where you are.

“I’m not doing enough,” I sobbed. “I’m doing the wrong things.”

“Are you willing to let that story go? “ he asked me. “Because that’s just a story you’re telling yourself.”

It’s a story I often tell myself. And it’s true I’m usually getting something wrong. It’s true there are plenty of great avenues of help that we’ll never find. But all three of us are seeking help with such hope and dedication. It’s not ever enough, but it’s our best effort. Just look at our little Iggy Pop. He’s learning. He’s making friends. He’s growing all the time. He’s a wild, white-hot ball of pure love. He’s perfect. And I will fail him many times before this gig is up. But that’s just one story. There’s another in which we’re all heroes.

I deeply relate to the desperation and confusion of the woman who wrote me the letter. This isn’t an answer at all. It’s just a story about my morning. But I hope it helps.

Guest Post at 28 Days of Play

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I have a guest post up today at the 28 Days of Play blog, over at Rachel Cedar’s You Plus 2 Parenting. It’s a cool series, in which writers and bloggers answer the question, “Do you play with your kids?”

Here’s a teaser:

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I spent my brief stint in college studying something called experimental theater. I loved theater class, but it did involve some pretty goofy activities. For instance, we spent hours rolling around on the floor, stretching and making weird kind of moaning/screeching/mooing noises in an attempt to find our “neutral voice.” Also, there was lots and lots of staring into people’s eyes and crying. And no class was complete if it didn’t end with a group massage.

After training like that, I figured I’d be the awesomest, most creative, least-inhibited mommy on the block. I mean, no one can bust out some improvised Shakespeare or sing the entire score of West Side Story quite like this mom.

As Peter Pan said, “Growing up is awful-er than all the awful things that ever were…”

I lived by that creed. I was convinced I’d never grow up. That I’d always hold sacred that spirit of playfulness I believe is essential to life as an artist. I vowed I’d never turn into my parents. See where this is going?…

Go HERE to read the rest!

Friday Faves 1/23

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1. I loved Kelly Wickham’s Talking to Children about Ferguson and Social Justice post at Little Pickle press. I’ve been thinking a lot about how to approach these tough topics in a developmentally appropriate way. I don’t want to raise Tariku blind to these deeply important issues, but I don’t want to frighten or overwhelm him either. Kelly writes, “The easiest definition [of social justice] presumes that everyone deserves equal economic, political, and social rights and opportunities. Teaching children that everyone is deserving of such things means teaching them to value diversity and all people. Instead of tackling all those things at once, however, it’s best to choose themes based on the questions that children are asking.” She also suggests using art projects to explore different topics, so that kids have a way of expressing feelings that might come up. It’s a terrific post and was extremely helpful to me.

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2. Who Was Martin Luther King Jr.? This biography series for young readers covers a broad range of historical figures. The stories are clear and engaging. For a brief moment now and then, these books can help me get Tariku more interested in Rosa Parks than Spiderman.

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3. The Buddha Board is the best holiday present we got this year. It’s simply a board with a ceramic surface, a brush, and a water receptacle. You paint on the board with the water, and as it dries the image fades. It’s a great emotional release as well as good practice at creating and letting go, again and again. I’ve spontaneously used it during some difficult conversations to paint funny pictures of my feelings (ie- a head on fire). It brought some humor to a hard moment. Tariku has been practicing his Japanese characters. I have no idea where he learned them. Don’t look at me- I just paint heads on fire.

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4. This extra large, ruled, soft cover Moleskine notebook is The One. I’ve used these notebooks as journals for years. My garage is filled with stacks of them. The Buddha Board got me thinking that for the last six months, I’ve drifted away from writing in my journal. Journal writing is important to me because, much like the Buddha Board, the writing is about process rather than product. Journals have always been the place I write terribly, messily, carelessly. It’s easy to shove aside when I’m racing toward deadlines. But journaling is essential to remembering who I am, and it informs and deepens my other projects. I’ve recommitted to it and have been busting out the Moleskine again.

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5. The Empathy Exams, by Leslie Jamison. Jamison manages to combine a mastery of craft with an ability to still leave the raw emotional seams showing. These brave essays reach both outward and inward, exploring sticky things like empathy and sentimentality without wrapping them up in a forced bow. It’s awesome.

To My Son on his Gotcha Day 2015

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It was T’s “Gotcha Day” last week, which is adoption-speak for the day we finally held him for the first time. I write him a letter every year, trying to preserve for him (and me) a snapshot of who he is at that moment in time. It has been six years. Six. When did that happen? The love in my heart for this kid blows my mind every day. Here is this year’s letter to my not-a-baby-anymore:

To Tariku on his Gotcha Day:

It’s a strange phrase- Gotcha Day. The way you say “gotcha” is so cute that it has overshadowed any doubt I may have had about the name. I guess I’ve never been exactly comfortable with how glib it sounds- how completely unequal to the task of describing that transformative day when we first saw your beautiful face. I will never know that day’s equal. I’ll never forget the too-thin contours of your fragile body, the understanding in your eyes alternating with confusion and skepticism. And always, that that special joy you bring to every room you’re in, the fundamental quality of yours that trumps all else.

Here is a little snapshot of you today… six years after we first met you. Nearly seven years old. How could that be?

You are a natural musician. You have been playing drums now for a couple of years already and the look on your face when you play is somehow both expressive and serene. You often give your dad and I a hard time about practicing, but, contrary to our free-spirited nature, we’re insisting. Because if we know anything, we know that it’s all about practice. Nothing worthwhile comes magically. Or rather, it is magic. But the magic only knows where to find you if you’re practicing.

Once you’re playing, you love it. You practice with your dad. When he was getting ready for this last tour, you played the entire Everything Will Be Alright in the End album front to back nearly every day with him.

You two are even improvising your own jams now. You asked me today for a neck holder for a harmonica, so you can play harp and drums at the same time. Hang tight- it’s on its way.

On Thanksgiving, you jammed with a roomful of teenagers at the LaZebnik’s house and I was awed by your confidence. Those kids adore you. You have such a big, wonderful tribe. There is so much love for you, it could blow the ceiling off the house.

You are an incredibly social kid. You are obsessed with birthdays, particularly your own. You start planning your next party about three days after the last. You make guest lists and wish lists and play lists. Don’t worry- we’re going to throw you an epic bash. Of course we will!

You hate that I limit your time staring at a screen, which is a big conflict for a lot of parents right now. I can’t wait to see how the next generation’s brains evolve, developing new ways of processing information. But with no crystal ball, how can I be sure what’s the best way to monitor your use of technology? Technology has given a lot to my life and I am as guilty as anyone of being glued to one screen or another a lot of the time. But I worry about your brain. About how the constant, distracting information barrage might impede your ability to think and feel deeply.

But I probably needn’t fret about that. You are and always have been a deep well, with a heavy history for such a little boy. Somehow you’re able to effortlessly combine that depth with your natural hilarity and mischief. You are very funny. You just mastered the “orange you glad I didn’t say banana” knock-knock joke and I doubt it will be your last.

The one thing I don’t limit is your treasured time investigating Google maps.

“What’s the biggest city in China?” you’ll call out to me as I do the laundry downstairs.

“What is the big airport in Tokyo?”

“This is where polar bears live!”

“This is the Indian Ocean!”

Lately your career ambitions as 1. Weezer drummer and 2. airplane painter, have been supplanted by your aspirations to be a medic. You are currently running a large dinosaur hospital, where the dinosaurs are bandaged with Scotch tape and toilet paper.

It is impossible to say what I am most proud of in you, but if I had to pick one thing it would be this kindness and caretaking, which doesn’t stop at dinosaurs but extends to your friends and family, too. Compassion is something that you’ve had to work on over the years. When you came to us, you were such a fierce, self-sufficient little thing; it was every man for himself. It seemed every move you made was meant to convey the sentiment: “I got this. Don’t bother, bumbling big people.” You still screech whenever anyone tries to help you with homework. But slowly you are learning to give and receive help and trust. Until very recently all the dinosaurs did was fight each other and then get shoved under the couch. Now they’re healing in your hospital.

You like math and science. You like the earth and the sea and the animals and the stars and the plants.

You still love your airplanes as much as ever. You go to the airport every Saturday and watch those giant beasts take off and land, take off and land, over and over. You never tire of it.

It is these things that captivate you these days: healing and flight. Because you, my wild and glorious boy, go straight for the miracles.

As I say to you every night before bed… I love you to the moon and back a thousand million billion times. You’re the best thing that ever happened to your dad and me. I can’t wait to see what this next year reveals to all of us.

With big crazy love always,

Mom

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Waving Goodbye

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My friend Helen died a few hours ago. Her daughter just called me sobbing as I was headed back into the house from my barre class.

Helen was our next door neighbor at the old house. She was there waving from her porch the day we moved into our beloved little home on tree-lined Mt Royal Drive. She had lived there for nearly sixty years.

Helen was quiet and always accommodating to a fault, but once you got to know her she was wisecracking and fiery. She remembered everyone on birthdays and holidays. The kids on the street called her Grandma Helen. She loved Tariku and never once looked askance at him, even at his most challenging moments.

Helen was ninety-one. For the past few years she’s been in an assisted living facility and I would sometimes go there to hang out and hear her stories. She once showed me a photograph of herself perched on the back of her husband’s motorcycle when they were first married. She raised four kids and then decided to go back to work as a cook in the cafeteria of one of of the local public schools. This was back when they actually cooked fresh, healthy food on the premises. She showed me pictures of huge pressure cookers filled with rice, stainless steel counters lined with trays of golden turkeys. She was so proud of that job.

On the weekends, she and her husband (now long-gone) used to go dancing. She loved to dance.

I often talked to Helen about my worries. She would laugh and say, “You sound just like I did.”

The hardest thing for me wasn’t coming to terms with the fact that Helen was going to die. She was eighty-two when I first met her, so it’s not like it was a surprise. But I was devastated when my witty friend began to fade mentally. It deeply saddened me that she seemed frightened and confused near the end. A few months ago, I went and visited her and we just held hands and cried.

I called the family into the living room this morning and told them the news. Tariku was so uncomfortable. He wouldn’t sit down. He rolled his eyes and fidgeted and said some really weird stuff (about graves and corpses). I suggested some appropriate things we can say to people who are grieving and then I kissed him and let him go out with his Auntie Jo for the day. I did my best not to shame him or correct him too harshly.

He is incredibly uncomfortable around loss, which makes sense, given the history of loss in his short life. He also tends to freak out when I express strong emotion. I think it makes him feel unsafe. This is the first major death in our lives that he’s really old enough to grasp. I’m going to try to give him a lot of space to have his own reaction to this, rather than the one I deem suitable.

My dear friend Claire Bidwell Smith is a writer and grief counselor and we talk often about death. We talk about how we might want to die, which is, of course, more a conversation about how we want to live. We talk about what might happen to us afterward. We talk about how to approach the topic of death with our children. I’m so glad I recently read an advance copy of Claire’s new memoir After This: When Life is Over Where Do We Go (you can pre-order). It gave me a vocabulary for approaching the topic of death with Tariku. It made me realize that I don’t have to have all the answers. Or even any of the answers. I just have to have a sense of what it means to lead a meaningful life.

In school, T learns that when people die, they go to be with Jesus in heaven. It’s not exactly my personal belief, but it doesn’t have to be. I tell him that it might be true, but no one really knows. That the Beatles may have said it best: And in the end the love you take is equal to the love you make. Helen gave so much love and compassion– to her family, to her neighbors, to everyone around her. And that’s what remains. That and a really cool black and white photograph of her on a motorcycle wearing a thick ponytail and pedal pushers, her arms wrapped around her husband’s leather jacket, a wide, sweet smile on her face.

I will miss you, Helen. I will always miss that time in my life, when you stood waving hello from your porch and Scott and I first walked through our doorway, our life together still so hopeful and new.

Here is another door. You are walking through it. I am waving goodbye.

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