Can you help us get Francis a dog?

Wherever he goes, Francis finds a friend. Here he is at a Lancaster County B&B.

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.

 

 

This is how free speech gets shut down. #BoeingGate

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.

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.

Russian Old Believers in Millville NJ

A few weeks ago we were con­tact­ed by some­one from the St Nicholas Cen­ter (http://​www​.stni​cholas​cen​ter​.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.

Links:
* Wikipedia: http://​en​.wikipedia​.org/​w​i​k​i​/​O​l​d​_​B​e​l​i​e​v​ers
* Account of US Lithuan­ian Bespopovt­sy com­mu­ni­ties: http://​www​.synax​is​.info/​o​l​d​-​r​i​t​e​/​0​_​o​l​d​b​e​l​i​e​f​/​h​i​s​t​o​r​y​_​e​n​g​/​n​i​c​o​l​l​.​h​tml
* OSU Library on icono­g­ra­ph­er Sofronv (PDF): http://​cmrs​.osu​.edu/​r​c​m​s​s​/​C​M​H​2​1​c​o​l​o​r​.​pdf
* Solzhenitsyn’s 1976 vis­it: http://​www​.freere​pub​lic​.com/​f​o​c​u​s​/​f​-​n​e​w​s​/​2​0​5​7​7​9​3​/​p​o​sts

In album St Nicholas Old Believ­ers, Mil­lville NJ (9 pho­tos)

 

 

 

 

 

 

 

 

 

Spiritual Biodiversity and Religious Inevitability

Emi­grants from the Irish pota­to famine, via Wikipedia

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.

Michael Kinsley: Did it matter if Iraq didn’t have WMD?

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.”

Here’s a nos­tal­gic list­ing of Bush Admin­is­tra­tion quotes assur­ing us WMDs exist­ed. (Thanks toStuffed­Dog for the link)