I recently asked Evan, what he wants for his 20th birthday, and he says he’s willing to forego presents (not too surprising) and cake (shocking) for a trip to the Firefly Music Festival in Dover, Delaware this summer. I was surprised that he would want to attend such a huge social gathering. On the other hand, he’s always loved music. Any of his extra dollars go directly to iTunes. And one of his favorite pastimes these days is cruising around the neighborhood, driving with the sunroof open, windows rolled down, and the music cranked up. Waayyy up.
Evan asked if just he and I can attend the music festival. I think he feels like he can be himself around me without being judged (which is true), and so he can relax and enjoy.
I started looking into this music festival thing. Not only are the passes $300 per person, but it’s not practical to not stay on site. In conjunction with the music festival, there’s also a GAC – Great American Campout. Thousands of people bring their tents and RVs or rent “pre-set” camping or glamping sites set up by the festival organizers. I dislike bugs and sleeping on the ground, so I checked out the glamping options which have beds and a/c. There are no toilets in the glamping tents, but they do come with access to “private air-conditioned restroom facilities”. In a neurotypical world, I’m guessing that’s all one would need to know. In our world, the devil is in the details.
Which spurred the following e-mail from me to the event organizers:
“Good day, My 20-year-old would like to attend Firefly as a gift for his upcoming birthday. He also has autism, and is very sensitive to public bathrooms, automatic flushing toilets, and bathrooms with hand dryers. My question is this. If we were to select, for example, “Infield Glamping”, could you tell me specifically all the details about the “Private air-conditioned restroom facilities”? What does the word “Private” mean? How many people/ tents share a bathroom? Is it just toilets or is it toilets and showers in the bathroom? Are there hand dryers? Automatic flushes? What exactly is a shower “fast pass” and how does that process work?
Is there any venue you could recommend at Firefly that would have no automatic flushes and no hand dryers?
I realize these may sound like odd questions, but it’s all important to him. I appreciate you taking the time to research, investigate and answer these queries. Have a wonderful day!”
Still advocating to this day, I’m trying to shift focus toward teaching Evan to self-advocate. It’s hard to break old habits, though, and I find myself jumping in to write e-mails or make phone calls on his behalf. At least these days, I “cc” Evan on any e-mails and/ or include his contact information. We’ll often make phone calls on speaker phone, so he can learn what to ask and how to answer queries. So I wrote to the Firefly event organizers, asking about the potty sitch, and included Evan in the correspondence.
Before I received a reply, I got a stiff case of sticker shock. As much as I’d love to rent one of the air-conditioned glamping sites, I’m not willing to pony up $1200 for the four-night stay (in addition to the passes). So instead we decided to rent a basic camp site close to the music. I just purchased an “instant” 4-person tent on Amazon, hoping that even with my visual-spatial challenges, I can figure out how to set it up properly. Evan struggles with issues with coordination (or lack thereof) and motor skills. Apple, meet tree. I’m not sure he’ll be much help in the tent set-up department, but we’ll manage. We’ll use blow up airbeds to make the ground a little less hard.
Bottom line is that come June, I’ll be hanging out with 80,000+ Gen Zers and Millennials, listening to music that I don’t recognize, sung by artists that I’ve never heard of, in huge crowds of rowdy “young people” (I really dislike crowds). I’ll be stuck in a tent with no A/C in the sticky summertime. Bugs and humidity and port-a-potties…oh my! And the total cost is around $1200 (I could go on a 7-day cruise for $1200)! Why on earth would I ever agree to something like this?
Quite simply, it’s because he asked me to. He asks for so little…this is rare that he actually requests something so meaningful to him. So off we’ll go. I’ll be praying for good weather, and taking a rather large cooler of adult beverages (they do sell ice on site and even have a Bloody Mary bar, so there’s an upside)! When I look back at our tumultuous history, and all we’ve been through, I stop and appreciate. And I’m thankful. I’m looking forward to some “mom and son” time hanging out with Evan. Not sure how many of these opportunities may come in the future, and I’m fully aware that I need to seize this one. Time spent with this beautiful, wonderful young man? Priceless!