Showing posts with label public. Show all posts
Showing posts with label public. Show all posts

Friday, June 29, 2012

I dare you


It's time for some challenge.

I've noticed that I've been more hermit-like in the past months, keeping at home to avoid the struggle and embarrassment that is going out with an unpredictable child. I haven't taken Soren to the grocery store in a year (yay Amazon Fresh delivery); I do errands when Soren is at school or in therapy; I know where all the drive-through Starbucks are.

For our boy, stores can be overwhelming, with new sounds, sights, and people. And oh, the wide open spaces! Soren just can't pass up an opportunity to run--away. I've had more than one episode of chasing Soren through the pharmacy just in time to prevent him from running out the front door. Scary stuff.

Can you guess whose challenges these are?
  • One of us feels especially embarrassed by standing out in public
  • One of us hates to have his hands held
  • One of us likes to lie down in stores as a way of regaining some control
  • One of us is fine with screaming in public when encountering new situations
  • One of us is too big to fit in grocery carts (okay, make that two of us)
  • One of us needs to be bribed with a drink to get through a quick errand (again, perhaps that's two of us)
  • One of us is feeling increased guilt about not living life in the open
So, this is the summer. The summer that Soren and I will bite the bullet and do the hard things that make us part of a community. We have a right to be out and visible in our neighborhood and city. Even if we stand out. Even if we feel awkward. Even if we need to practice this getting-out skill.

So here's a short list of our challenge targets. I'd like to tackle at least one a week.
  • Coffee shop
  • Grocery store
  • Ferry trip
  • Water playground in north Seattle
  • U-pick berry farm
  • Farmers' market
  • Ice cream place
  • Neighborhood dive bar (just checking to see if you're still awake)
What about you? Can you think of a summer adventure that will require some bravery, some confidence on your part? I'd love some compatriots on this journey.

Onward!



Monday, May 28, 2012

"Stimming" and our family

Soren has developed a new behavior of wiggling his fingers near his eyes, almost like sign language. Many family and friends have asked me what it means, so I thought I'd use this space to explain it generally (as best I can) and describe how we approach it in our family.

This type of behavior is a common one among people with autism. It's is called self-stimulatory behavior, or "stimming." These fidgeting or fiddling behaviors, like hand-flapping, which you've probably seen, might address a variety of needs: anxiety, fear, boredom, overstimulation, understimulation.

My guess is that Soren's various stims, like finger-wiggling, or excited jumping with thigh-slapping, serve different purposes. Finger-wiggling is a calming activity that we see at night or when there's not much going on. Jumping is often a response to positive stimuli, like music or a video, but there may be an element of dealing with overstimulation there, too.

There is a history of working with kiddos in therapy to extinguish this self-stimulatory behavior, rationalizing that stims draw attention to the child as different, may get in the way of attending, encourage zoning out, make learning and school in general challenging, and so on. When I think of the "Quiet Hands" goal, I picture those English-only boarding schools (run by Christian missionaries!) for Native Americans in our country, where using native language was forbidden. (Captain Richard Pratt, who started the first Indian boarding school, famously used the motto, "Kill the Indian, Save the Man." Wow--the parallels to the autism community are striking.)

The rationale about fitting in is always a red flag for me when it comes to dealing with autistic behavior. It points more to my insecurities and society's awkwardness and need for homogeneity than being anything related to my child. That this is a red flag for me is pretty ironic, because one of my main challenges (even pre-children) has always been hating to stand out. Honestly, I'd love for our family to fit in. Be perfectly average. But that's not going to happen.

My whole outlook on stimming was changed when I read this post. (Please read it!). This passage in particular rocked my perspective:
My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.
What rich meaning is behind those "noisy" hands. And how one-dimensional we can be when we judge the flapping.

So for the time being, while Soren's stims seem not to harm himself or others and don't get in the way of learning or having fun, we are fine with them. There's something almost dance-like in the graceful movement of his fingers. I wonder what that's like for him. If the stims increase in frequency or intensity, we may need to address them, but in a gentle way. I like the Floortime approach to trying to figure out what is the (most likely, sensory or emotional) need that the stims express, and channeling that energy into interactions with a parent or teacher that meet that need.

Honestly, the presence of stims still can be distracting, annoying, and embarrassing for me, especially when we're out and about in the community. They can broadcast our boy's autism diagnosis without that being anyone's business. But this week, at least, I'm trying to see what purpose those stims serve for Soren.







Monday, April 2, 2012

Not today

I had such plans for a powerful post today. It's Autism Awareness Day, the start of Autism Awareness Month, and we've just received updated prevalence numbers from the CDC on autism (1 in 88 now). I was going to write about what this means, especially for the newly diagnosed children and their families. I was going to write about what our call to action is.

But not today.

Today, I just don't feel like being an advocate. I don't want to raise awareness. I don't want to be the picture of an autism mom. I don't want to schedule and over-schedule my child. I don't want to push him. I don't want to push at an IEP meeting. I don't want to be sleep deprived. I don't want to research therapies. I don't want to deal with insurance, doctors, or medications. I don't want to be held up as a graceful example of special needs parent. I don't want to worry. I really don't want to worry.

Today, I just want to get in my car and drive--alone. Anywhere. Maybe somewhere warm. Mexico, that's it. I want to sit on the beach and drink beer. I want to ruminate only about what color to paint my toenails. I'll stop at Nordstrom and buy four pairs of impractical shoes. Then I'll catch up on what those Real Housewives are doing.

Maybe it was a challenging night, or the fact that Erik's been gone a lot, or because my little guy seems overwhelmed a bit more lately. But today, the autism reality (and its media saturation) is not what I want to think about. Today, I want to escape. I want to forget, just for a little while. I want to be in a place where the only worries are what to wear and what to drink (flip-flops and sangria, I think).

And I know tomorrow I'll put on my cloak of advocacy again. My child deserves that, needs that. But in this hour, I'm just thinking about my beach in Mexico.
 

Give Me a Nap | Template By Rockaboo Designs | 2012