A public service announcement from my wife Julie earlier this evening:
Autistic people feel anxiety just like all of us. However they may cope differently. For neurotypicals, if the anxiety is a result of someone taunting or being somehow rude or abrasive or annoying, we know to walk away. But in my experience with my spectrum kids, they don’t understand why people are mean, and they’ll freak out or just keep coming back for more. They don’t necessarily get that it’s best to leave some people alone and walk away. It takes many such lessons to “get it” because their minds work differently. They go from the specific to the general, not the general to the specific, as Temple Grandin points out. They are easy targets for bullies. #TheMoreYouKnowAboutAutism
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.
But there is one way in which school on the island of misfit toys is better to work in than the church on the island of misfit toys. The school, in all its aspiration talk, never says that it is trying to imitate Jesus.
The Golden Rule project is an improbable accomplishment by unlikely volunteers. Members of Veterans For Peace, they are a motley bunch that might have appalled the original crew, all conscientious Quakers. They smoke, drink and swear like the sailors, though most of them are not. Aging and perpetually strapped for money, the mostly retired men sought to banish their war-related demons as they ripped out rotten wood and replaced it plank by purpleheart plank.
The two teams worked independently, studying different skeletons and using different methods to analyze their DNA.
The Harvard team collected DNA from 69 human remains dating back 8,000 years and cataloged the genetic variations at almost 400,000 different points. The Copenhagen team collected DNA from 101 skeletons dating back about 3,400 years and sequenced the entire genomes.
Yahoo announces plans to kill off Pipes. Just a few days ago I was tweaking one of my essential Yahoo Pipes recipes — the one that powers the QuakerQuaker editors’ feed — and did wonder how the service was still around after not being updated for years and years. Well here you go, it’s getting the ax. I’ll have some adapting to do to make it all work with IFTTT.
We know that a path out of the crisis in Burundi is still possible and stand in support of all those who work for a peaceful and just path forward. We hope that you will join us in holding Burundi in the Light and take a moment to prayerfully consider some of the ideas that Burundian friends have told us are important.
Friends and Armenian relief. At the 100th anniversary of the start of the Armenian genocide is marked worldwide, Friends Library in London shares some of the documents from Quaker work there:
The Library’s collections include records of Friends who, in official or unofficial capacities, observed the effects of persecution and massacres of Armenians in the decades leading up to the 1915 genocide or were involved in relief work with refugees, orphans and the dispossessed.
Bringing this perspective home, as some of us have looked at the actual work of Dover Meeting, we’ve seen that our committees might be regrouped into four or five larger bodies that might not have to be defined as committees. Call them ministries, working groups, teams, “minis” for “mini-meetings/ministries,” or whatever, they could be gathered around a set of concerns and have a coördinator or caretaker instead of a clerk.