A Reflection of Your Normal

For one week out of the year, my family gets the opportunity to immerse ourselves with other families  (and therapists and volunteers) who all understand the spectrum of autism in intimate ways.

We just finished our fourth summer at Adam's Camp Alaska, held in the small ski town of Girdwood, where for five days life with a kiddo on the spectrum is everyone's normal.

The siblings play dodge-ball and soccer, they swim at the Alyeska pool and hike on Byron Glacier, they enjoy a sleepover at the Director's rental house, without ever having to answer the question:

"Why does your brother talk funny?"

"Why doesn't your sister speak?"

"Why does your brother wave his hands like that?"

"Why does your sister make those funny noises?"

They get to let out their breath and just be, nothing more, nothing less, than kids at play.

And the same goes for their parents.

As our children with autism receive intensive therapy--five campers, four therapists and two volunteers, for five hours-- we carry on uninterrupted conversations with folks who "get it" as we hike, go out for coffee, or hit the Girdwood Brewery on the parents' night out.

On the final day of camp, the parents join around a large table for a potluck breakfast, facilitated by a local Methodist preacher. He admits to not walking our road but shares that a few years back he lost all hope and embarked on a journey to prove God didn't exist, only to come out on the other side as a spiritual leader.

We find ourselves openly discussing taboo topics such as the feelings of resentment, isolation, and depression that can follow a child's diagnosis. No pat answers get passed around with the cinnamon buns and bacon, only the sharing of stories, vulnerable responses, and a feeling of connection.

It is connection after all, that we all seek, and even more than the therapy goals and activities--activities that include dog sledding and a train ride and gold mining and rafting--it is these connections that make this week at Adam's Camp so vital.

Seeing another boy on the spectrum hug my quirky son after the closing ceremony and say, "I'll miss you Elias"--this means more than finding a valuable ore.

This is our gold.

Or sitting around a campfire, in the parking lot of Alyeska, where multiple families park their trailers and RV's, not overly concerned when one of our children sits too close to another, or interrupts the typical kids' game to ask an unrelated repeated question.

"When is your birthday?"

"Did you know I'm a volunteer at the Sea Life Center?" 

I get to observe my eight-year-old daughter Olive, who often seems to carry only a few drops of patience for her own brother on the spectrum, respond with compassion to the boy who asks her every day if she picks out her own clothes.

I see an athletic typical 11-year-old include Elias in the soccer game without an eye role or condensation.

I experience families integrating and relaxing in a way that almost always feels out of reach during the other 364 weeks of the year.

We are not alone.

We are not the only ones on this raft just trying to stay afloat.

Not only do we have company, but in their midst, the sky doesn't seem so bleak.

During the overnight, when the Trailblazer campers, Elias included, sleep at the therapists' rental, and the siblings stay at the Director's place, the parents enjoy dinner out on the town and then another fire without any children to follow around with our eyes and our answers.

And sure, we still talk about our kids. The moms even fill over a dozen empty beer bottles with water, pick wildflowers, and sneak over to the Trailblazer's house to "flower-bomb" their porch. Giggling like teenagers we get caught during our retreat by the music therapist who chases after us in his pajamas and socks, only making us laugh even harder.

"I'm guessing you had to drink all those bottles first," one of the therapists says with a smile when we pick up Elias the next day.

All for a good cause.

I'm not sure who gets the most out of Adam's Camp, the parents or the kids.

About half-way through the week Olive says, "You know how Logan doesn't have a sibling but he still gets to come to camp?"

"Yeah?"

"Well, can just a sibling come to camp?"

"Well you have to have a sibling with autism to come to Adam's camp."

"I know but if Elias gets too old can I still come?" 

The sibling program originally attracted Nick and I to apply, back when Olive visited our school nurse on a daily basis, claiming a medical professional as her own, the same year she asked, "How come Elias gets to have lots of doctors and I only get to have one?"

The same year she first said: "I wish I had a different brother."

There are times we all wish for a different set of cards, a do-over, a genie in a bottle to grant us three wishes, and yet we wake in the morning to the life that holds us, the life we mold, the life our feet indent as we walk, sometimes brashly, sometimes gingerly, but always forward towards the vast unknown.

Often our feet sink in the grime of this life of losses, in the mud of despair, and right when we feel stuck beyond repair we discover a hand to hold, a ray of hope to nudge us free.

After a week of Adam's Camp, my legs feel a little lighter and my boat feels more full.

Thank you team, tribe, friends, for this gift of time.

Comments

[Shell]

What a wonderful gift for all! I love your writing which always resonates and helps me feel less alone in ASD land!

[Christy]

Thank you Shell for taking a moment to write--you are not alone;)

[Troy]

I have read this ten times and each time with a bigger and brighter smile while holding back tears of complete joy... thanks for the insight from the "other side." This camp holds a special place inside so many of our hearts!
Please tell the family hello and that I am already looking forward to next year!