Vacation to Bend

Last week we spent a glorious six days in Bend, Oregon, with my parents. We had no agenda--just time for walking, biking, hiking, hot tubbing, eating, and movie watching. Erik and I had a wonderful date night. We pulled Soren out of school to do this getaway, which was worth it (and might be considered therapy, right??). 

The only downside was the near-constant monitoring of Soren on the second-story open catwalk in the house we stayed in. He has a compulsion to climb and hang in precarious places. There was an unfortunate iPad screen incident from this perch.

Soren is in a phase of compulsive hugging and snuggling. It was really amped up with his beloved grandparents. I'm sure some expert would tell us we need to curtail that behavior, since it isn't socially acceptable with strangers. But right now, I'm eating it up. 

\

Sparks Lake area

Poor Seattle boy, a snow rookie

Well, of course you need to sample it.

En route to Mount Bachelor

 Lots of hiking/walking. 

Soren started out walking...

but really wanted to travel this way.

The colors!

Osprey nest

Some Grandpa time.

Equanimity

Just found this gem from Anne Lamott. I find this so freeing.

     Gratitude, not understanding, is the secret to joy and equanimity.

          --From Plan B, Further Thoughts on Faith


I'm pretty fed up with unanswered questions, especially with Soren's regression, and I'd love to approach a place where understanding the cause or cure of it all is not the goal for me.

Here's hoping your weekend is full of thanks and joy.

An easy transition (pinch me)

I wanted put in writing that things are okay for Soren at school. Actually more than okay--pretty darn good. There is no crying on the drive in to school, no crying as I say goodbye, no crying as I pick him up. No calls in the middle of the day. We can say the "s" word ("school") around him without starting a breakdown with panicked sobs.

Instead, when we speak of seeing Teacher David and Teacher Gabe, Soren grins. He helps me pack his backpack with his lunch and iPad. And as I drive the ten minutes to his school, he smiles the entire time. The teachers tell me he has great days. He even tolerated an all-school assembly for 45 minutes today, which is about 44 minutes longer than he tolerated assemblies last year.

I'm trying to accept this lack of anxiety as the gift it is, instead of waiting for the other shoe to drop. I can't think of anything in particular that we've done to ensure Soren's happiness at school, just as we couldn't think of a single way to help him when he was deep in anxiety.

Even if this contentment shifts into something different, I don't want to forget that this September, Soren loved school.

First day of first grade

Autism infighting

One of the first items on my to-do list after Soren received an autism diagnosis was to find a support group. I knew I needed support and answers and a place to be myself--right away, as I felt I might as well have my breakdowns with others over coffee. And our city has a lot of support groups. I found some local groups, found a parent mentor, and did a lot of reaching out online with other parents and virtual communities. But something never really felt right; none of these places felt like a true home. And I was left (and still am) very lonely as an autism parent.

You'd think it would be easy to find community and gain support and advice as you walk this journey, and especially as you begin it.  After you settle in to the autism parenting "community" (quotes intended), you'll begin to see that it's not so easy. There's so much disagreement about the right way to address autism in your child, and sometimes your biggest doubters and foes will be your fellow autism parents.

You have:

• ABA therapy and those opposed
• Floortime therapy and those opposed
• Pro-vaccine and vaccines-injured-my-child camps
• Biomedical solutions and those opposed
• Drug solutions for symptoms and those opposed
• The gluten-free, casein-free diet adherents and its questioners
• Those who want a cure or recovery and those who think that's offensive
• Those who view autism as neurodiversity and those who don't
• Those who seek to extinguish autism's socially awkward tics and those who don't
• Those who view autism as a tragedy and those who don't

You'd be surprised by how antagonistic these camps can be. It is infighting. Don't even begin to look at autism parenting blogs; it's incredible how much vitriol you'll find in the comments and how discouraged you'll be, still with no answers and no community.

I feel more alone now in my autism parenting journey than I did when I first started out.

The bottom line is that there is no known cause of autism, and there are no known cures (which by itself is a hot button). There are million different ways to approach treatment and therapies. And because this whole diagnosis is shrouded in murkiness, with no easy answers, parents tend to get defensive about the choices they make. You can't do everything (for time and money reasons), so you choose. And you defend. And you question others, maybe because you're not really sure yourself. It's not like cancer or diabetes or even PTSD, where, with few exceptions, you know your path to cure or treatment and can commune with others on this path.

I don't need to explain how this is just another kick to the dirt for autism parents, who are already bewildered and desperate for answers. But mostly they are desperate for community, for others to walk this path with them.

The upshot for me is that I don't share too much (on this blog or in person) about what our therapy choices are, especially what we've chosen NOT to do and why, and I don't ask others for advice. I've learned that this is a very solitary journey that our family is on, as we try to make a path that feels right and is consistent with our very personal views about parenthood and childhood and autism.

This idea of loneliness in this autism parenting journey is hitting me harder lately. I'm a rule-follower. I'm a consensus-builder. I'm a team player. I'm an empathizer. But I don't feel at home in this parenting community. There's too much comparison and too much defensiveness (myself included, of course) and too much evangelizing. At the root is this incredible self-doubt: Am I doing enough for my child? What if your path is better?

Oh how I wish there was a way to come together knowing that we do have this commonality. But boy it would take some great courage, and maybe we're all just tapped out in that department.

Words

Some of the things Soren can say with his iPad.

And his cool protective case 

(with some gnaw marks in the lower right, of course)

Eyes and Ears

Perhaps it's my friendship with Dick,

who watches and listens from his wheelchair

but cannot speak, has never spoken,

that makes me aware of the daily

unintrusive presences

of other mute watchers and listeners.

Not the household animals

with their quick bodies--they have cry

and gesture as a kind of language--

but rooted lives, like trees,

our speechless ancestors,

which line the streets and see me,

see all of us. But August

they're dark with memories of us.

And the flowers in the garden--

aren't they like our children were:

tulips and roses all ears,

asters wide-open eyes?

I don't think the sun bothers

 with us; it is too full

of its own radiance. But the moon,

that silent all-night cruiser,

wants to connect with us noisy breathers

and lets itself into the house

to keep us awake. The other day,

talking to someone else 

and forgetting Dick was in the room,

I suddenly heard him laugh.

What did I say, Dick? You're like the moon,

an archive of utterance not your own.

But when I walk over to you,

you turn into the sun,

on fire with some news

of your own life. Your fingers search

among the words inked on your board,

the few, poor, catchall words

you have, to let me glimpse

the white heat trapped inside you.

--Lisel Mueller, from Alive Together

Summer, so far

Ah, summer. We're out of routine, not doing much therapy, not really eating well, and going to bed way too late, but we are having a blast.

These are a few of our favorite things:

• Swimming in any lake, pool, river, or ocean. 
• Sprinklers. The colder the better.
• Popsicles
• Hiking
• Corn on the cob
• Ice cream cones. Big ones.
• Our cabin in La Conner, including a new swing set
• Lots of free time with Daddy
• Visits with grandparents and cousins

I think it's quite healthy to break the rules every so often and just have fun as a family. I'm calling this Summer Therapy. 

For when you need a blankie

Soren doesn't use a blankie or lovey. Never did. And I wish he did. Man, I'd love to be able to fix his hurts with such a simple object. And one that goes in the washer.

Right now, plenty of people in my life are hurting. The kind of hurt that words don't help. The kind that brings real physical pain--that pit in your stomach, those breaths that are stuck, incomplete, in your lungs. I wish there was something I could do, bring, say.

Today, I'd love your help. I want to create a list of thoughts, actions, or practices that can bring some relief from that deep, visceral pain that life brings. What has been a balm for you? We all could use a list of quick go-to steps to refer to in the darkest moments. It can only help to have a list of images that get us through until we have that therapist appointment or until morning comes--our adult version of a blankie to hold during the darkest of nights. These ideas don't fix the problem, but they can soothe us, if only for a little bit.

Here is my short list. Will you share some of your ideas in the comments?

1. Turn off the news. And maybe ignore Facebook.
2. Make something warm to drink.
3. Pet your dog.
4. Go outside and smell the air.
5. This thought: It has been bad before, and it has always gotten better.
6. If you can, take a walk.
7. This poem.
8. A glass of wine (oh, come on. I'm being real here. It can help. The sleep part, especially.)
9. The 23rd Psalm.
10. Think of one thing to look forward to. Even if it's just a latte in the morning or a hot shower.

Thank you.