"Dear Elias," Olive writes in her Sibling Camp notebook, part of Adam's Camp Alaska, a therapeutic adventure camp for families with a child on the autism spectrum, "I wish you would get off your ipad and play with me."
She signs the letter: "Love Olive".
Meanwhile Nick and I sat around a campfire, with other parents of children on the spectrum, sharing details of our lives only possible to air with others who walk amidst the absurdities of autism. We tromped through the woods together, discussing our darkest days, when we let ourselves imagine a different life without IEPs and therapy and medication and tantrums that rise from the smallest shift, an earthquake from a rose petal falling to the floor.
I wish you would play with me.
The siblings of children with special needs carry their own blank books, empty pages instead of photographs of two similar faces building blocks together, pushing each other on swings, running hand in hand through a field of flowers. There is a longing they will always live with that is hard to put into words without seeming ungrateful for the sibling that is theirs. And in Olive's case, hers alone, with no other sibling to share the experience of Elias as a brother.
On another page in her notebook, Olive answered the question: What is your favorite thing to do with your sibling? I was told she struggled to answer this. She finally settled on a picture of them playing in the sprinkler, something they haven't done together this summer, so she dug into her memory bank to a previous year, to a time she remembers laughing with her big brother.
I want this to be an easy question for my daughter, but I'm learning this is her story too and she harbors her own sadness and a not so hidden desire for a different brother.
"What was your favorite thing about camp?" I asked Olive as we drove home from Girdwood, the small ski town 45 minutes south of Anchorage.
"Playing with Hailey and Joseph." Two of the siblings in her program, age 11 and 9, who she followed around like a bumble bee to flowers. Not rafting or dog sledding or ice cream or yoga or the sleepover on Tuesday night. Just playing with typical kids who understand what its like to have other people stare at your family when you walk into a public space, kids who don't ask her, "Whats wrong with your brother?"
Just kids, playing.
There is so much I love about Adams Camp Alaska. The team model of multiple therapists from different disciplines working with a small group of five children as they participate in outdoor adventures, the time away from my kids to rest, to run, to hang out with parents who get it, but I think what makes the experience so meaningful to me, to my family, is the sibling component. The time and attention given to the forgotten ones, the children whose lives are altered by the needs of their brother or sister and yet rarely get a chance to express it.
And even if they didn't spend the week talking about their special needs sibling and how he or she makes them feel, and maybe even because they didn't have to, that they just enjoyed the variety of activities and time together, that is important enough for me to want to do Adams Camp again next year. Even though Elias ages out of the Trailblazer program, I want the experience to continue for our family.
"But I can still go..." Olive said, when she heard me saying Elias will be 13 next year and technically too old for the program-- though they have already made an exception for another older camper, so we hope to continue, as long as we can afford it, and the camp can receive the funds to keep expanding.
For I hope to sit around that fire again, with both familiar and new parents, laughing about these abnormal lives we lead, releasing years of pent up emotions with the embers, with the crackle of wry humor acquired only by traveling so far between milestones, when the world of parenthood looks nothing like the vision we painted prior to conception, but we walk on anyways, because, honestly, what else would we do.
And I want to give Olive that gift of time to play with other kids, who understand what its like to long for your sibling to just play with you.
I wish you would get off your ipad and play with me.
Me too, Babe, me too.
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