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!

Nora

“Above all, be the heroine of your life, not the victim.”

   – Nora Ephron, 1941-2012

Swimming vacation

We're in re-entry mode here as we come back after a lovely mini-vacation in Chelan with Erik's family. We rented a house with a (heated) pool, and I bet you can guess where we were most of the time.

Soren and his cousins (five boys five and under!) were little fish the whole time. It's great seeing Soren in the water--it's really a great equalizer for kids. He's pretty much fearless in the water now; he can float, put his face in, open his eyes under the water, kick, and jump (er, belly flop). Now we just need to teach him some actual swimming moves like paddling so we can take off his life preserver.

Fish-eye view

Soren lounging with cousin Matt

Aunt Jenny with cousins Jerry and Will

Happy!

As a special gift to his parents, Soren slept through the night each night there. I think it's a combination of lots of sunshine and lots of swimming (as in, hours and hours every day). Poor kid is probably pretty disappointed in our Seattle home this week.

Celebrating a birthday, funky style

Soren's fifth birthday is coming up, and I'm about to send out save-the-date emails to family members. This year, I'm hoping to craft a day that is meaningful to both Soren and us, even though that will look different from the typical fifth birthday celebration. For example, I'm asking for no gifts. Really and firmly. They just don't make sense for Soren, and it makes for awkwardness for the parents and giftgivers. Instead, I'll be asking for cards or donations to our local Autism Center.

Soren and Uncle Jason at his second birthday. Love those chubby little piggies!

Fourth birthday with pizza (crust first, naturally).

The prep work has me thinking about what I'd like others to know about how to "do" birthdays for a special child. Here are some tips:

• Ask about gifts ahead of time. Toys are tricky--some kids like ours don't really play with toys or play obsessively with only a few kinds of them, and the developmental level of toys enjoyed may be lower or higher than you'd expect. But some parents may need specific items for therapy, like puzzles or stickers, or clothes.
• Come to a party or gathering with no expectations. Join us on our zen autism journey of just letting things unfold. Don't expect participation in blowing out candles, posing for pictures, or any opening of gifts. If our boy spends his birthday mostly watching the Cars movie or climbing trees, or if we end things early, let that be okay, because it certainly is okay with the birthday boy and us. 
• Remember that our kids may not understand the whole concept and importance of birthdays. 
• Birthday gatherings are sensory experiences: lots of people, lots of activity, probably new and different food, like birthday cake, and lots of attention. This can be really overwhelming for some kids like ours, and they may need to take a break in a separate room or by watching a movie on the iPad. This isn't rude; it's what we have to do to help our kids regulate.
• Even though we do the birthday thing differently, the parents of special needs kids still love it that you adore and celebrate our child. We'd love it if you could ask us what's special to our kid and how he can best feel love on his special day. For Soren, for example, it's wrestling, chasing, and tickling. It's unorthodox, but that's how you can relate to him, way more than with a cool new Lego set.
• Birthdays are emotional and bittersweet for the parents of special needs kids. They remind us how our kids are different, and how advancing age means a greater gulf between our kids and your typical kids. Help us by celebrating how much you appreciate our child's strengths, not what he can or can't do. Don't ask us how speech is progressing (it isn't) or how well toilet training is going (it's not even on our radar); ask us how Soren likes swimming with Daddy or what he loves to do these days. Reminisce with us about the day he was born. 

Now, on to the celebration!