We love our Francis. Now 11, he can go from sweet and huggy to upset in a matter of moments. Autistic, sensory issues around sound can easily trigger an meltdown. With three siblings, sound is all pervasive in our house. We've read books, tried therapy, had him on anti-anxiety medications... While everything's helped, nothing has helped enough.
It feels like a crucial time for him. He's getting too big for angry outbursts. He needs to learn how to deal with his emotions and calm himself down. A teenager or young adult melting down in public won't get the sympathetic glances—or even tsk-tsk judgements—that passersby display for toddlers. These next few years will largely determine whether he will be able to become a semi-independent adult.
What Francis does love is dogs. Anytime we run into a dog he befriends him within a matter of moments. He shows a patience and calmness with them that is transformative. He's started going on weekly dates with our uncle to walk around the marshes. And so it's time to find Francis a therapy dog. The hope is that a trained dog would help him in times of stress. Those skills should then (fingers crossed) transfer over to dog-less times.
We've put together a fundraising page to help defray the considerable costs. Details at the link.
Earlier today Donald Trump tweeted that Boeing was spending $4 billion dollars to renovate Air Force One. He was off the facts by orders of magnitude but that doesn’t mean he didn’t know knew exactly what he was doing. It’s time we stop trying to read his tweets as exercises in truth finding. It doesn’t matter if Trump didn’t know or didn’t care about his numbers: With authoritarians, we must follow the effects, not the logic.
Trump’s tweet came less than half an hour after the Chicago Tribune posted a few short quotes from the Boeing CEO saying they were concerned about the implications of trade with China under a Trump Administration. It was relatively tame stuff and of course a multinational with billions of dollars in China is going to be concerned. About a quarter of their aircrafts are built for the Chinese market.
But follow not the logic but the effect: if you criticize this president in public he will destroy your shareholder value. Boeing lost half a billion dollars in value following Trump’s 140 characters. Every CEO in America will now have to think twice before speaking to the press. It would be fiscally irresponsible to do otherwise. A few quotes in a paper isn’t worth that amount of shareholder value.
Free speech isn’t just court cases or a few lines in the Constitution. Even the CEOs of the largest corporations in America need to watch their tongues. Silencing has begun.
I was ambushed while leaving the Elmer Swim Club today by a guy I’ve never met who told me never to return, then told me he’s a vice president of the governing association, and then told me he had papers inside to back him up. Although it was meant to look like an accidental run-in as we were walking out, it was clear it was staged with the manager on duty.
The problem is the behavior of our soon-to-be 10 yo Francis. He is difficult. He gets overwhelmed easily and doesn’t respond well to threats by authority figures. We know. He’s autistic. We deal with it every day. There’s no excusing his behavior sometimes. But there’s also no missing that he’s a deeply sweet human who has troubles relating and is making heroic strides toward learning his emotions. We driven the extra distance to this swim club for years because it’s been a place that has accepted us.
People at Elmer — well most of them — haven’t dismissed Francis as our problem, but have come together as an extended family to work through hard times to help mold him. He’s made friends and we’ve made friends. The swim club’s motto is that it’s the place “Where Everyone is Family” and we found this was the rare case where a cheesy tag line captured something real. Family. You don’t just throw up your hands when someone in the family is difficult and gets disrespectful when they get socially overwhelmed.
The VP was a control-your-kids kind of guy, clearly unaware of the challenges of raising an autistic kid — and clearly unwilling to use this parking lot moment as a learning opportunity. I tried to stay human with him and explain why this particular community was so special. The swim coaches always cheered our kids on despite always coming in dead last — not only that, but even put Francis in relay races! There have always been lots of extra eyes watching him and willing to redirect him when he started melting down. Most of the time he needs a drink, a snack, or some quiet sensory time. To be in a community that understood this is beyond miraculous for autism families. The worst thing is to start to scream or threaten, which unfortunately is some people’s default. Some authority figures know how to earn Francis’s trust; others just make things worse over and over again. At Elmer the latter finally won out.
We first started coming to this pool for swim lessons in 2009. After six years becoming more involved in this deeply welcoming community, I had started to allow myself to think we had found a home. I’d daydream of the day when Francis would be 18, graduating from the swim team and people would give him an extra rousing cheer when his name was called at the end-of-season banquet. We’d all tell stories with tears in our eyes of just how far he had come from that 9yo who couldn’t control his emotions. And we were at the point where I imagined this as a central identity for the family – the place where his older brother would sneak his first kiss on the overnight campout, or where his younger siblings would take their first courageous jumps off the high dive.
Julie’s making calls but I’m not holding my breath. What happened is an breathtakingly overt violation of the club association’s bylaws. But would we even feel safe returning? Francis is easily manipulated. It only takes a few hardened hearts at the top who believe autism is a parenting issue — or who just don’t care to do the extra work to accommodate a difficult child.
Fortunately for us, for a while we had a place that was special. The Elmer Swim Club and Elmer Swim Team will always have a special place in our hearts. Our thanks to all the wonderful people there. Here’s some memories:
Movie night at Elmer Swim Club the other week — Francis relaxes and self-soothes in the water.
Gregory gets his first end-of-season Elmer Swim Club participation award for swim team
Francis would sometimes leave early for relays so Elmer Swim Team Coach T. stood with him to help him understand when to go.
Gregory learning the kickboard on the Elmer Swim Team.
Francis at the Elmer pool in 2014.
Gregory’s first meet on the Elmer Swim Team, 2014. This meet was at home at the Elmer Swim Club pool.
Theo taking Elmer Swim Club-sponsored lessons in 2009.
For Laura and Gregory, summer means the Elmer pool.
Update: Our post shedding light on the Elmer Swim Club’s trustee misbehavior and the board’s violation of its own bylaws has now had over 1800 Facebook interactions (shares, likes, comments) and the blog post itself has been read 9,970 times. Terms like “autism elmer pool” are trending on our incoming Google searches and the post looks like it will be a permanent top-five search result for the pool. Although our family will never set foot in its waters again, our absence will be a remain a presence. Discussions over what happened will continue for years.
I share these stats to encourage people to talk about misbehavior in the public sphere. It doesn’t help civil society to bury conflict in the tones of hushed gossip. Just as we as parents work every day to help our autistic son make better decisions, all of us can insist that our community organizations follow best practices in self-governance and abide by their own rules. Bylaws matter. Parking lot civility matter. Kids should be held responsible for their actions. So should trustees.
A few weeks ago we were contacted by someone from the St Nicholas Center (http://www.stnicholascenter.org) asking if they could use some photos I had taken of the church my wife is attending, Millville N.J.‘s St Nicholas Ukrainian Catholic. Of course I said yes. But then my correspondent asked if I could take pictures of another church she had heard of: St Nicholas Old Believer’s Church. It’s on the other side of Millville from our St Nick’s, on an ancient road that dead ends in woods. We had to visit.
The Old Believers have a fascinating history. They were Russian Orthodox Christians who refused to comply with liturgical changes mandated by the Patriarch and Czar in the 1650s. As usual, there was a lot of politics involved, with the Czar wanting to cozy up with the Greek Orthodox to ally Russia against the Muslim Ottomans, etc., etc. The theological charge was that the Greek traditions were the standard and Russian differences latter-day innovations to be stamped out (more modern research has found the Russians actually were closer to the older forms, but no matter: what the Czar and Patriarch want, the Czar and Patriarch get). The old practices were banned, beginning hundreds of years of state-sponsored persecution for the “Old Believers.” The survivors scattered to the four corners of the Russian empire and beyond, keeping a low profile wherever they went.
The Old Believers have a fascinating fractured history. Because their priests were killed off in the seventeenth century, they lost their claims of apostolic succession – the idea that there’s an unbroken line of ordination from Jesus Christ himself. Some Old Believers found work-arounds or claimed a few priests were spared but the hardcore among them declared succession over, signaling the end times and the fall of the Church. They became priestless Old Believers – so defensive of the old liturgy that they were willing to lose most of the liturgy. They’ve scattered around the world, often wearing plain dress and living in isolated communities.
The Old Believers church in Millville has no signs, no website, no indication of what it is (a lifelong member of “our” St Nick’s called it mysterious and said he little about it of it). From a few internet references, they appear to be the priestless kind of Old Believers. But it has its own distinctions: apparently one of the greatest iconographers of the twentieth century lived and worshipped there, and when famed Russian political prisoner Aleksandr Solzhenitsyn visited the U.S. he made a point of speaking at this signless church on a dead end road.
People sometimes get pretty worked up about convincing each other of an matter of pressing importance. We think we have The Answer about The Issue and that if we just repeat ourselves loud enough and often enough the obviousness of our position will win out. It becomes our duty, in fact, to repeat it loud and often. If we happen to wear down the opposition so much that they withdraw from our companionship or fellowship, all the better, as we’ve achieved a patina of unity. Religious liberals are just as prone to this as the conservatives.
These are not the values we hold when talking about the natural world. There we talk about biodiversity. We don’t cheer when a species maladapted to the human-driven Anthropocene disappears into extinction. Just because a plant or animal from the other side of the world has no natural predators doesn’t mean our local species should be superseded.
Scientists tell us that biodiversity is not just a kind of do-unto-others value that satisfies our sense of nostalgia; having wide gene pools comes in handy when near-instant adaptation is needed in response to massive habitat stress. Monocrops are good for the annual harvest but leave us especially vulnerable when phytophthora infestans comes ashore.
It’s a good thing for different religious groups to have different values, both from us us and from one another. There are pressures in today’s culture to level all of our distinctives down so that we have no unique identity. Some cheer this monocropping of spirituality, but I’m not sure it’s healthy for human race. If our religious values are somehow truer or more valuable than those of other people, then they will eventually spread themselves – not by pushing other bodies to be like us, but by attracting the members of the other bodies to join with us.
God may have purpose in fellowships that act differently that ours. Let us not get too smug about our own inevitability that we forget to share ourselves with those with whom we differ.
By now, WMD have taken on a mythic role in which fact doesn’t play much of a part. The phrase itself – ‘weapons of mass destruction’ – is more like an incantation than a description of anything in particular.”