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.