Something valuable

We do not believe in ourselves until someone reveals that deep inside us something is valuable, worth listening to, worthy of our trust, sacred to our touch. Once we believe in ourselves we can risk curiosity, wonder, spontaneous delight or any experience that reveals the human spirit.

--ee cummings

(via Priscilla Gilman)

A little joy

You might need a lift after this week's heaviness. Here are a few glimpses of our happy boy, on vacation on Maui. I think his cheeks must hurt from smiling so much.

Snippets

How was your Thanksgiving weekend? Ours was spent with extended family, lots of swimming, not too many leftovers (a good thing??), and even some sleeping in. 

Have you read the reviews in the The New York Times Book Review (front page) and Salon.com about Andrew Solomon's new book Far From the Tree: Parents, Children, and the Search for Identity? The book describes how "parents of extraordinary children find joy in difference, and strength in themselves." The reviews are amazing, glowing--Julie Myerson in the Times says "It’s a book everyone should read and, although everyone won’t (at a hefty 700 pages of text, with more than 100 pages of notes, it’s no pocket guide), there’s no one who wouldn’t be a more imaginative and understanding parent — or human being — for having done so." It's en route to our house right now. I may host a virtual book club on this one; let me know if this is something you'd be interested in joining.

Two quotations grabbed me this weekend:

"Poetry is a life-cherishing force. For poems are not words, after all, but fires for the cold, ropes let down to the lost, something as necessary as bread in the pockets of the hungry. Yes indeed." 

--Mary Oliver (via Priscilla Gilman)

"I wasn't born to be a fighter. The causes I have fought for have invariably been causes that should have been gained by a delicate suggestion. Since they never were, I made myself into a fighter."
--Margaret Anderson (via Writer's Almanac)

Here's hoping your re-entry after the long weekend goes gently.

Teeth, embarrassment, and thankfulness

We recently had a morning at Seattle Children's Hospital for dental work. Because Soren is so orally sensitive (the ultimate clencher), we need to use full anesthesia to do any dental work other than the very quick peek at the dentist's office (with three additional people holding down limbs).

Going to the hospital for the somewhat routine procedures is emotional for me. It's a children's hospital, for goodness' sake, and we're surrounded by sickness and injury and disease and even death. All parents have a specially colored ID lanyard, and I feel like I might start hugging any one of them out of empathy and solidarity. Even the air in the cafeteria feels thick, with the bonds between parents making me feel almost self-conscious. There's just a very thin line that separates us from the serious health issues that so many of these families face; it could so easily be us, as I've learned on this autism journey. It has nothing to do with what we do or don't do as parents.

So we go to the hospital because my kid has cavities. I'm embarrassed by how embarrassed those cavities make me, if that makes any sense. Dental health is a big deal (especially to Miss Only One Cavity over here), and it's my responsibility as a parent to manage my kid's teeth, at least now. It doesn't matter that brushing his teeth is a nightly two-parent strength test. I feel like a bad parent. And I feel a little judgy when I see the silver flashing from Soren's mouth. What five-year-old has caps??!

And then there's the layer of guilt. Soren's teeth must have been hurting him for months as we waited for a dental surgery spot to open up. One of his baby teeth had to be pulled because it was so damaged. I couldn't help him--heck, I couldn't even tell that he needed help. My baby. I feel like I failed him because his teeth are MY responsibility now.

And then I remember how superficial these pangs of embarrassment and guilt are when we're surrounded by The Big Stuff. Yep, my kid now has a mouthful of visible metal, and he had pain, but he's here, otherwise very physically healthy. I know embarrassment, and I know the puzzlement and grief at autism and its related anxiety. But I don't know that life-changing worry about disease or injury or death. I feel guilty that we're in this hospital for such a minor procedure, I feel guilty that I'm so embarrassed about my child's teeth--and I feel so grateful that this is all that's on our plate right now. And I know things could change tomorrow.

A morning slice of life

How good it feels to have Soren past his anxiety (for the most part). Instead of his tearful dread in the morning, we have jump-dancing. It may look a little funny, but I'll take it, thank you.  I thought this little video clip was a good portrayal of life in our house these days: a little kooky, a little stopping to smell the morning, and, of course, coffee.

Thankful, part I

I'm always inspired by bloggers who post every day in November with their gratitudes. (Hi, cousin Amanda!) I thought I'd set my sights a bit lower and try for at least two thankful lists this month.

First off, Soren's anxiety is pretty much gone! This gift is pretty much all we need this month. There is rarely crying on the way to and at school, or sobbing inexplicably at night, or random breakdowns (of both of us) in the car. My anxiety level is also lowered; there is nothing as wonderful as seeing a cheeky smile in the morning instead of weeping. This past month of anxiety has been one our most trying, and I'm just so thankful it's behind us, even for just now.

Second, we have a fabulous trip planned to Maui later this year. When we went to the same location last year, Soren had so much fun. He is made for water. And hours of swimming every day meant sleeping through the night AND a daily nap for him. Oh that we could be so lucky again. (As you may recall, sleep is kind of big deal in this house.)

Third, with Soren in kindergarten, I find myself with lots of free time. As an introvert, alone time is pretty fantastic. I've been organizing, baking, doing Pilates, and running more. Eventually I need to do some research about a job (gasp!), but for now, I'm relishing the balance that this time brings.

Finally, I'm so thankful for the amazing team of therapists and teachers that have come into our lives. I can tell that it's more of a job for them; it's truly a calling and a gift they have to interact with and care for--and enjoy!--our boy and others like him. I feel another blog post about our angelic therapist/nanny/babysitter, Lindsay, itching to come out soon.

What are you thankful for in your corner of the world?

Church

I love it when something new exceeds expectations. We spent a lovely Sunday afternoon attending church--all three of us, together the whole time.

That's a big deal, and quite overdue (as in years--ahem). 

The service is a new one, at a local Episcopalian church. I think what convinced me to try it out was this description of the service:

"The monthly gathering, with all the elements of an Episcopal Eucharist, is a “safe space” where all manifestations of interacting with God are not just acceptable but enthusiastically welcomed. All kinds of kids are welcome to worship in this grace-filled and Spirit-laden way – from those with special needs to those who are especially wiggly."

The service was exactly what we needed:

• No expectations about when to speak (or not to speak) or make noise.
• No expectations about where to sit or stand, or whether you can pace or even prance.
• Plenty of hands-on activities like coloring and drumming to cater to all interests and attention spans.
• Communion for all of us, and even gluten-free wafers for those on special diets.

I should say that I still love our home church, and the pastors and lay leaders have gone out of their way to make us feel welcome (and welcome back). But to figure out what to do with Soren during the main service (get a high school volunteer to watch him with his class? have one of us step out with him after the children's message? or have just one adult go to church each Sunday) was just another decision to make, something else to manage. I'm kind of full up with decisions and accommodations, frankly. I anticipate that as I grow more in my role as advocate for my child and as I grow less interested in offending others, I will be ready to find a solution for our family to attend our home church regularly.

But for now, it's just great to have a space where all of us are welcomed and all of us can worship with ease--together.

Things we CAN do

We focus a lot of deficits around here. It's hard not to. We address them in therapy, we talk about them in goal-setting in school, we try to ignore them as others point them out in public. And I occasionally feel sorry for our family because of the activities that we can't do and the abilities we don't have: We can't go easily to Costco or the grocery store, travel on a long airplane ride, play with others in the standard way, have a meal with all of us sitting down, go to a movie, and so on.

But we can do so many things, meaningful things that families get to do. Some of these may seem small, but they are all important because we can do them together. I need to remember these "cans."

• We can all savor pizza and ice cream entirely too much.
• We all love a good car ride.
• We love a good swim.
• We can all walk to the coffee shop and wait maybe 5 minutes for a very rewarding hot chocolate.
• Erik and I can make a fancy dinner while Soren is occupied by the iPad.
• We can all snuggle in bed.
• We can have friends and family over to our place.
• We can go on hikes (our boy is a hiker of Boy Scout material!)
• We can tickle, chase, swing, and run.
• We can pick and eat strawberries from our backyard patch, and sometimes the picked ones are even ripe.

I got to snuggle my little guy on the couch before school today. That's big. And I'm thankful.

Where we are

It's been quite a September for all of us. I visited Houston to visit my ailing grandfather and extended family; he died less than a week later. And Soren has been experiencing extreme anxiety, we think related to school. We've been visiting even more specialists to find a way to give him some peace. And his anxiety becomes my anxiety, in a very enmeshed way.

Galveston marsh at dusk

I'm pausing today to acknowledge how hard this month has been. So much of my parenting has been powering through the tough stuff, out of necessity. I don't have time or energy to decompress much. There's lots of action to take, which sometimes is a blessing. The tough stuff then catches up; doesn't it always? I feel like I've been hit in the gut, and I'm forced to feel the tough stuff, but a compressed, intense version of it all.

So I'm trying to avoid that explosion right now by just being here, not trying to dismiss the fact that this is hard. And that this will all pass.

Yesterday, today, tomorrow

Yesterday was
  Picking sand out of my suitcase from a trip to Galveston
  Comforting my boy, who is still quite anxious about school
  An evening glass of wine that tastes like peaches

Today is

  Still drying tears of anxiety
  Welcoming back our nanny/therapist after a long summer without her
  Getting to dig in my purse for my sunglasses after the fog burned off

Tomorrow will be
  A new tradition of pizza to celebrate the end of the school week
  Remembering where I stashed my fall and winter clothes (thanks, Indian summer!)
  Movie night at home--definitely a comedy for this week.


What do your yesterday, today, and tomorrow look like?

I have loved the stars too fondly

"I have loved the stars too fondly to be fearful of the night"

--Sarah Williams, "The Old Astronomer"

This quote jumped out at me (if you must know, via a Pinterest pin from Etsy). I know that it's meant to be about an astronomer talking to his pupil (and often wrongly attributed to Galileo, it seems), but it resonates with me in a different way. In the midst of fears about the future for our child and our family ("what will happen if..."  kind of worries), this quote reminds me that the scariest imagined future will still involve this very loved child, the brightest star we know. 

Not so dark, I see.

What I've learned since my twenties

1. You are not your job. Even when you work into the night and on evenings. You are more.

2.  You can learn new stuff. Knitting, dragonboating, pilates, half-marathon running. Breastfeeding. Ikea furniture construction.

3. Wine tastes good.

4. You can rely on your parents and family for the hard stuff. You can be vulnerable and flawed, and they will still be your biggest cheerleaders.

5. Marriage doesn't solve everything. Either do the perfect job, pregnancy, childbirth, parenting, quitting your job, losing five pounds, and having a clean house.

6. Long car rides are the best therapy.

7. Most arguments, hang-ups, and worries will indeed fade in time.

8. These things are worth it: hiring out housecleaning, prewashed lettuce, any kind of travel, really good olive oil, getting up early (unfortunately), pedicures.

9. A little lipstick improves your day by 25 percent.

10. Life is holy. And hard. And lovely. And sometimes just is.

Ugly thoughts

I had postpartum depression (PPD) starting when Soren was about 3 weeks old. (Side note: Did you know 10-15% of women self-report experiencing PPD yet only 15% of those are treated?*) Luckily I recognized almost right away that the horrible feelings--deep sadness, anxiety, inability to concentrate, lack of bonding--were indeed PPD, and I had lots of help getting better.

One of the ugliest parts of the experience, other than the complete lack of joy at having a new, adorable baby, was the jarring, often violent thoughts of harm coming to my child. I had clear visions of Erik dropping the baby over cement and the aftermath. I dreamed repeatedly that I forgot my child--in the car, or even that I had a child at all. But the worst was the thought that I had when I plummeted to my lowest: it was of my hurling my own baby over our porch railing like a football.

Shocking and unpleasant, I know. Thankfully, I had a therapist who helped me see that these thoughts did not mean that I was actually going to follow through on these actions. (Doctors and therapists had ruled out the more serious and very rare postpartum psychosis, in which case these images would have been alarming indeed.) She explained that our minds know the most horrible thought that we can think, and when our defenses are down when we have PPD and crazy hormones and exhaustion, we go there.

We know exactly how to torment ourselves best.

What's more, the very fact that I was and am horrified by these thoughts is reassuring; it means that I know these images are vile. I feel guilty and sickened when I think them because they are not who I am or what I intend to do.

I'm thinking of this truth lately as I've had some difficult feelings and thoughts about Soren. Nothing like violent images or impulses this time, but just ugly feelings and words that my mind uses to describe or think about Soren and his disability. I won't spell out what those are; they are horrifying and embarrassing, and I'd kick your butt if I ever heard you say them about my child. But I know that in the midst of stress and confusion, my mind is choosing the nastiest way it knows to question my ability and character as a mom. (I'm pretty clever that way.)

I am horrified, to be sure. But I'm not panicking. I'm giving myself a wide berth because right now, parenting feels hard and I'm pretty drained and emotional. I am oddly reassured that I am so embarrassed by these nasty thoughts because it shows these thoughts are incongruous with who I am as a parent. It's almost like my mind brings out these zingers just to keep me on my toes and see if I will fold under the embarrassment and self-disgust.

But today, dear mind of mine, I have your number. You're right--you've found the most shocking and nastiest images for me to stew over.  But I'm not taking the bait. This child of mine is loved, loved, loved. And I am a good mom.


-----
* Please seek help right away if you are experiencing any symptoms of postpartum depression or postpartum psychosis. A great starting point for identifying symptoms and making a plan to get help is the site Postpartum Progress.

Ten happy things

• This new mug:

• Walking around Greenlake at 7 pm, and still light (for a few more weeks).
• This new bike trailer for Soren:

• Upcoming family reunion in Galveston, including a solo plane trip for me and a fully loaded Kindle.
• Trader Joe's chocolate-covered ginger.
• New school clothes and shoes (OK, fine, there were a few for me, too).
• Upcoming backyard remodel, including a play space for Soren. 
• First leaves turning. 
• Last-minute visits from moms and mothers-in-law. 
• Ketchup. 

What about you? What big and small things are making you smile?

Last days of summer

We've spent the last few weeks soaking up the very last of summer. Soren starts school (kindergarten!) tomorrow, but for today, we are remembering relaxing at the cabin, spending time at the grandparents' in Coeur d'Alene, Idaho, and all the swimming, biking, kayaking, and lazing we fit in. I don't remember when I've enjoyed this season so much.

No pressure, really

Hey, you. Yes, you. The one with the knitted sweater that has sat 75% finished for the past four months. I give you permission to leave it (maybe for now and maybe for good) and start something new, perhaps something quick and easy and, ahem, fun. You know you want to. Here's your official green card.

Maybe you're like me--a bit compulsive, filled with self-imposed rules that help the world go round. No? Lucky duck. If you are, I get it. How you force yourself to finish projects--especially LEISURE projects--before you start new ones. You punish yourself to finish a boring book because, you know, that's the rule. There Can Be No Half-Finished Books. And we know where this leads us: no knitting, no reading, no fun.

In a conversation with my mom about a particularly stagnant book (The Lost City of Z, if you must know), we laughed when she gave me permission--using that word specifically--to quit the book and start a new, lighter one. It was just what I needed. It's sad that that permission had to come from outside, but I'll take it. How freeing!

Oh, I place pressure on myself in all areas of my life, but I've been noticing eroding pleasure in leisure and hobby time in particular. Knitting, reading, running, cooking, sewing, pilates have a sheen of "should" on them. And I want my fun back.

So this week, I started a new, easier knitting project (shocker: while my unfinished sweater project is still on the needles!). And I've put yet another serious book aside (it was about decluttering--how dreadful is that during downtime?). And I'm considering taking a few weeks off from running, since doing that has crossed over into "have to" instead of "get to" lately. I'm trying to make leisure gentle again.

The new knitting project. Happy sigh.

I'd love to know: Do you have internal rules that dampen your joy? How do you move beyond them?

Thankful: August

• The wonderful week spent at our La Conner cabin with my parents, such wonderful grandparents. Great food thanks to my mom, sleeping in, playing in the ocean, chores completed thanks to my dad, general silliness and fun times. So relaxing that I forgot what day it was. Grateful that we all get along like old college chums. And a fun-filled day (escaping Seattle heat) with my sister and her twin babies and toddler. So much little boy love! 

• A cabin day with my dear special-needs mom friends (no kids!), filled with talking and listening like no one else can. And wine. And wine. And promises of doing this quarterly.

• The summer that finally came to Seattle (okay, for two weeks). Warm enough to dry our clothes outside.
• Blackberries. That is all.
• Erik's purchase of a kayak. Finally, we can go together (and I can get over my irrational fear of orca whales swimming under my solo kayak and eating me).
• An upcoming blogging course, Blogging from the Heart. Really feels like back-to-school!

I'm hoping your August was filled with little blessings, too. What are you thankful for this month?

Summer at the cabin

Summertime means weekends at our cabin near La Conner, Washington. It's usually a 1.5-hour trip from Seattle, and once we arrive, everyone--even Gary the dog-- is a little calmer and happier. Here's a little tour of what we've been up to.

No, that's not an Instagram filter. The water really was that green. Guess who was first in?

Blackberries ripening!

We still need to work on technique at the track.

Waiting for dinner. Can't beat this view!

Brats for the boys.

I must have taken a similar shot hundreds of times. Sunset at the cabin never gets old.

New play equipment means work for Daddy, fun for Soren.

Quiet morning with (barely visible) cranes in the water.

Here's hoping that you had a beautiful weekend in your corner, too!

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.