Over the past couple years as Ethan has made progress, we have slowly scaled back on our weekly therapies (think: Speech, OT, Neurotherapy, Craniosacral, social groups, etc.) and gradually added in some activities and sports that Ethan has shown interest in (think: soccer, basketball, piano lessons and cub scouts; things Ethan’s neurotypical neighbors and classmates are often interested in, too.
Don’t get me wrong…we haven’t just thrown him out into open water with no life vest! Each of these more “typical” activities he’s chosen have been carefully crafted with supports and surroundings that would give him the best chance at success. For soccer and basketball, we chose Upward Sports, a Christian-based sports organization that focuses more on teamwork and self-growth than it does on competition, scoring and winning. (Read my post HERE about Ethan’s Upward experience.) For piano lessons, I knew Ethan had a love and fascination with music from early on, but I worried about putting him in structured and pressure-filled group or private lessons with an instructor who might not understand his differences. Well, God placed the most patient, kind, compassionate and understanding piano teacher right next door to us! Our next-door neighbor teaches Ethan piano 1:1 and completely understands and accepts when he’s having a rough day and just cannot perform or stick it out for a full lesson. (You can read more about Ethan’s start to piano HERE.) And, on the flip side, our sweet neighbor gets to celebrate in his piano accomplishments and joys with us, too. Just over a week ago, Ethan performed two songs (by one composer) that Ethan combined beautifully into one fluent piece at his school’s talent showcase – in front of the whole school and numerous parents and guests! Ethan’s sweet teacher, our dear neighbor, was there to watch, clap and give him a congratulatory hug afterward!
And, just last fall, we decided to let Ethan try Cub Scouts through the Boy Scouts of America. He has enjoyed attending weekly pack meetings and working to earn belt loops and pins in a variety of categories. He has loved the field trips and outings and even discovered that he likes to volunteer for the local Meals on Wheels location with in-house needs. But this week, we embark on what I view as a monumental adventure in terms of participating in activities with his fellow (neurotypical) Weblos…Twilight Camp! (For those of you wondering…“twilight” here does not refer to vampire-themed activities, but instead an outdoor day camp, which takes place in the afternoon and evening hours!)
So, this means that we’re pushing forward from weekly meetings or field trips lasting 1-2 hours to a full week of outdoor day/evening camp in the heinous Texas heat. This will require following directions, building step-by-step crafts, walking from station to station carrying a 5-gal bucket with his supplies & projects, trading hand-made “swaps” with appropriate etiquette, learning to properly use BB guns and bow/arrow, tolerating the sun (+ sunscreen) and the bugs (+ bug repellant) and will enable him to build camaraderie with his walking den mates and den leaders. All that AND he will get to pitch a tent on Friday and camp out overnight in culmination.
Wow. That’s a lot for a 9-year-old boy with Asperger’s Syndrome. Right?
Yes. But, as usual, I’ve been working to prepare him for it. I decided it would be best to get the required training so that I could attend and assist his den leaders throughout the week – just in case. There’s a chance he’ll do beautifully without much intervention/support from me. But, realistically I know that odds are – he will meltdown at some point (especially given the heat factor – it will be in the upper 90’s the entire time we’re there, and the time factor – he will be “on” and expected to be on his best behavior for upwards of 4 hours extending past his usual bedtime).
We’ve talked a lot about what to expect and what appropriate/inappropriate responses might be in countless situations. It struck me that just a year or so ago, I would’ve created an elaborate social story for Ethan. But, he’s grown and developed SO much – that for the most part – social stories are just not appropriate or necessary anymore!
He’s absolutely psyched and I’m even if a little nervous, I’m quite excited myself. I’m so proud of Ethan for taking such a huge step and I’m so thrilled that thanks to all of our interventions (think: special education support, social stories, etc.), treatments (think: special diets and other biomedical & out-of-the-box interventions) and therapies (see abbreviated list above) over the past 5 ½ years, that we’re able to even consider giving this a go!
I’m working to set my expectations so that I am not left feeling discouraged throughout the week. I know the heat (+ sunscreen + bugs) won’t just affect Ethan; they will all affect me, too. So, I’m trying to prepare myself to let lots of minor things go and model a positive, upbeat attitude for Ethan and all the other kids and adults at the camp. (That stated, please feel free to say a little prayer for me each evening this week if you are so inclined!)
Is your child participating in a new activity or camp this summer that is exciting to you or your family? If so, we’d love to read about it below in the comments section.
Until then, here we go…off to Twilight Camp!
Leigh Attaway Wilcox is Editor in Charge of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007 (now available for digital download via Moving Picture Books). Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.