Autism, anxiety, and bullies

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

Elmer Swim Club: the heartbreak of autism parents

Elmer Swim Club
Fran­cis at his favorite place in the world: the top of the Elmer high dive

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:

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.

Reading: Peggy Senger Morrison’s release vs reject on the island of misfit toys

Read­ing: Peggy Sen­ger Morrison’s release vs reject on the island of mis­fit toys. Sort of about what’s hap­pen­ing with Friends in North­west YM, but not exactly. Inter­est­ing…

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.

Banishing the demons of war plank by rotten plank

In National Geo­graphic, Jane Brax­ton Lit­tle writes about the restora­tion of one of the most sto­ried protest boats of the twen­ti­eth cen­tury:

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.

Friends Jour­nal ran an arti­cle by Jane, Restor­ing the Golden Rule,  back in 2011 when the VFP vol­un­teers first con­tem­plated restora­tion, and a longer fol­lowup by Arnold (Skip) Oliver in 2013, The Golden Rule Shall Sail Again. Of course, the cool thing about work­ing at a estab­lished mag­a­zine is that it was easy for me to dip into the archives and find and com­pile our 1958 cov­er­age of the ship’s famous first voy­age.

You ca fol­low more about the restora­tion work on the VFP Golden Rule web­site or check out pic­tures from the re-launch on their Face­book page.

Golden-Rule-crew-1958

 

DNA Deciphers Roots of Modern Europeans

DNA Deci­phers Roots of Mod­ern Euro­peans. Cool detec­tive work using DNA to under­stand human migra­tions.

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

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.

Joint statement on Burundi by Quaker orgs

Joint state­ment on Burundi by Quaker orgs. A state­ment on the sit­u­a­tion in the cen­tral African coun­try signed by nine Quaker orga­ni­za­tions, posted on the AFSC site:

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

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.

Reorganizing the meeting organizational chart

Reor­ga­niz­ing the meet­ing orga­ni­za­tional chart. Jnana Hod­son:

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.