There are many more productive things to do right now, but this idea set up shop in my head and getting them out feels necessary. Pretty sure I’ve used the “best of times, worst of times” gimmick before, but that was the first thing that came to mind amidst a hectic and enjoyable Declan weekend, followed by a much-needed respite in Declan’s world.
The details don’t really matter, it is about hitting the major points to keep things moving along. We had family visiting over the weekend, which meant two days filled with some of the hits. Chaos in the pool, a hibachi dinner, loads of relatives to pay attention to him, family walks with Sunny the dog, etc. All good things, albeit things that meant our kiddo was going to be a bit strung out and tough to corral at various times over the course of the roughly 36 hours of activity. Generally, he did great. If there is a defining image from the weekend, it was him sitting on the couch nodding off repeatedly during a pre-bed movie — trying desperately and failing to stay awake and keep up the fun. We even caught a break after the company left on Sunday and we got a visit from his favorite neighbor/fake big brother which meant even more excitement.
Now for the “worst of times.” Mixed in with the fun was the text on Friday saying he needed to be picked up early from his camp because he was being “unsafe” with the aide I hired to be his support for the six-weeks of camp. Followed by 24 hours of dread before receiving the text I feared was coming when the aide texting me to say the understandably, though frustratingly, did not feel comfortable working with him the rest of the summer. Which put the remaining five weeks of his camp participation in jeopardy.
Commence the mental spiral. I slept terribly, lying in bed thinking and stressing and fretting about what this meant for him for the rest of the summer. Should we pull him from the camp altogether? How would we occupy his time? Why am I so bad at hiring people to help him? So many questions, absolutely no answers, and all the plans for how we hoped the summer would go for him blown up in 24 hours. Yes, selfishly, also all the plans for how I thought my summer would go were also blown up, as the stay-at-home parent most likely to try and navigate whatever solutions, or lack of solutions, were to come. In those late night moments, I felt the two emotions that come when I’m in my darkest places with Declan: helpless and hopeless.
Helpless as I search and grasp around for ways to make his life better, and hopeless at the prospect that this stuff never gets fucking easier, and seemingly gets harder. It was a long night.
Sunday was better, although still anxious. I did what we do when problems emerge, which is start looking for fixes, for answers. Step-by-step, a little bit at a time. Try an idea, see if it works, try something else. It’s now Wednesday, and that’s still where I am. A bit farther down the road with potential solutions for this specific problem, but still no permanent fix. And I’m speaking only for the direct problem of finding someone to serve as his aide at camp, so that he can enjoy the rest of his summer with his peers. The bigger questions don’t have easier answers, and I’ve only scratched the surface on those. More on that in a future blog post, perhaps.
In the short term, it meant that I’ve been his aide for camp this week. I’m typing this post on a deadline, because I need to be there shortly after noon when he comes off the bus from summer school. It’s not an ideal solution — far from it — as it forces me into a situation where my hopes of a productive summer drift away amidst the hours of his camp. I think it also doesn’t serve either of us well (or Rory for that matter) when we spend so much time together that my patience and energy reserves deplete. But this was the solution available that allowed him to keep participating, so here we are.
It also provided the moment of magic and inspiration for this post with a brief visit to Declan’s world.
I did my best to be upbeat and energetic as his camp helper on Monday, trying to not let my disappointment at how things played out to impact his experience. Who knows how good a job I was doing, but after he finished his lunch, we had a few minutes in between activities to explore the playground. He’s not a big playground kid — most of the activities are beyond his skills and interest — although I did get him to chase me around for a bit. That is until he saw the man mowing the lawn.
I’ve detailed many of Declan’s obsessions over the years in this space, though I don’t recall if we’ve mentioned lawn mowing. He loves watching people do yard work with equipment. Mowers, weed whackers, leaf blowers, all are big hits for our guy. In this case, the man on the riding mower was close enough that his attention was not being diverted until the man stopped mowing, or drove farther away. Not a big problem, I’m happy to let him indulge viewing the things he likes, unless it was time to go back and do an activity with his fellow campers. That was my worry, as extricating him from the things he likes is often, shall we say contentious. In fact, that is what lead to the incident with the helper on Friday that put us here.
Then there was the matter of the high five. Like many Declan obsessions, these things start slowly, but slowly take over. Sometime in the last few months it’s not enough for him to observe people doing the things he likes, he also wants to reward them with a high five. If you are employed to collect shopping carts at a grocery store in Central Connecticut and have yet to receive a high five from Declan, you are in the distinct minority. Hibachi chefs, life guards, mail people, garbage truck drivers…these are just a few folks whose high fives he has sought in recent days. Sometimes successfully, sometimes not. In this case, he badly wanted to high five the “mow man” and I did not see a safe, or practical way to make that happen. Between that, and the fear of getting him back to his camp if the man was still mowing, things were looking bleak.
Then the magic of Declan’s world appeared. In Declan’s world, of course every mow man and construction worker and everyone else is happy to stop what they are doing and wave, or come over and give a high five. That’s not the real world, and that disappointment is what I braced for. It wasn’t necessary on this day. On this day, Declan’s world, however briefly, became the reality. As the mower got closer, the man parked his machine, hopped off and came over to the fence where Declan and I were standing and gave him a high five and a fist bump. “How have you been buddy,” the man said. “I haven’t seen you in awhile? You’ve gotten tall.”
With that, after another round of high fives, he retreated to his mower and continued his work while I put together the pieces of Declan’s world. Several summers ago, before he was enrolled in camp, he and one of his helpers would come to this same park and watch the people mow the lawn. Because I’m guessing the landscapers of Cheshire building and grounds aren’t used to having a fan club, and because Declan can be such an exuberant presence, the man remembered all these years later.
I’m not going to pretend this charmed moment changed everything. This week has still been a challenge, as every day is with our special guy (and his, at times, perplexing brother). I still end up in the helpless and hopeless place way more often than I would like. Yet those moments when the world Declan imagines and longs for become the reality are truly something to savor, which is why I wanted to write about it. To remind myself what a special place his world is.
In Declan’s world, the geese and other animals always make noise, and fly overhead just when you want. Every dog is always ready to snuggle, and there is a mascot in a costume nearby. The train conductors, and garbage men, and mail carriers always beep their horns when they see him. The wind blows through the trees whenever he needs a calm moment to stare up and see the branches swaying. In his world the grocery store robot is never charging, it is always working — better yet, every store has a robot! The high fives are plentiful and available at all times in his world, and there is always someone ready to swim with him and dunk their head under water
His world isn’t the reality, but amazingly and against all odds, with the force of his personality and persistence, he has brought it much closer than we could have ever imagined. It’s a kinder, simpler world, and being able to spend even one moment in there with him is a privilege and a joy.
High five.