Elmer Swim Club: the heartbreak of autism parents

August 27, 2015
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.

Can we count the ways that the McKinney video is messed up?

June 9, 2015

mckinney2When the McK­in­ney video start­ed trend­ing I was­n’t in a state to watch so I read the com­men­tary. Now that I have, the whole thing is com­plete­ly messed up but at least three parts espe­cial­ly unnerve me:

  • The com­plete­ly unnec­es­sary commando-style dive-and-roll that intro­duces Cor­po­ral Eric Case­bolt. Some reports describe it as a trip but to me it looks like he’s play­ing a Hol­ly­wood action hero stunt dou­ble. Has he just been watch­ing too many of the police videos he’s been col­lect­ing on YouTube?
  • That none of the oth­er offi­cers saw his derring-do and said “yo Eric, stand down.” Is this some­thing cops just don’t do? And if not, why not? We all know what it’s like to be hopped up on too much adren­a­line. I know peo­ple do weird stuff when their rep­til­ian brain fight-or-flight mech­a­nism cuts in. It seems that offi­cers should be on the look­out for just this sort of over­re­ac­tion and have some sort of safe word to tell one anoth­er to take a chill.
  • The video­g­ra­ph­er was a “invis­i­ble” white teenag­er. He walked near­by – and occa­sion­al­ly through – the action with­out being ques­tioned. At one point Case­bolt seems to pur­pose­ful­ly step around him to put down his dark-skinned friends. The video­g­ra­ph­er told news reporters that he felt his white­ness made him invis­i­ble to Casebolt.

I nev­er quite real­ized all the race pol­i­tics behind the switch from pub­lic pools vs pri­vate pool clubs. I grew up in a Philly sub­urb with two pub­lic pools and very much remem­ber the con­stant wor­ry that Philadel­phia kids might sneak in (“Philadel­phia” was of course code for “black”). The town­ship did have a his­tor­i­cal­ly African Amer­i­can neigh­bor­hood so the pools were racial­ly inte­grat­ed but I’m sure every dark-skinned town­ship res­i­dent was asked to show town ID a lot more than I was. And it’s hard to think it was entire­ly coin­ci­den­tal that both pub­lic pools were locat­ed on the oppo­site ends of the town­ship from the black neighborhood.

There are no pub­lic pools in the South Jer­sey town where I live. A satel­lite view picks out thir­teen pri­vate pools on my block alone. Thir­teen?!? There’s one pri­vate pool club across town. There’s a lot of casu­al racism around here, pri­mar­i­ly direct­ed at the mostly-Mexican farm­work­ers who dou­ble the town pop­u­la­tion every sum­mer. If there was a town pool that reflect­ed the demo­graph­ics of the local Wal­mart park­ing lot on a Fri­day night in July, we’d have mini-riots I’m sure — which is almost sure­ly why we don’t have a munic­i­pal pool and why wealthy fam­i­lies have poured mil­lions of dol­lars into backyards.

(My fam­i­ly has joined the Elmer Swim Club, a pool locat­ed about half an hour away. While the major­i­ty of mem­bers are super nice and I haven’t heard any dodgy racial code phras­es. The pool is diverse but is most­ly white, reflect­ing the near­by pop­u­la­tion. That said, I’ve read enough Ta-Nehisi Coates to know we can rarely take white towns for grant­ed. So.)

Derecho Storm Damage in Mays Landing

June 30, 2012

Last night a huge thun­der­storm front with a phe­nom­e­non called a dere­cho swept across South Jer­sey. Where I live in Ham­mon­ton the strangest part of it was a strobe-light effect caused by dozens of cloud-to-cloud light­ning flash­es per minute, punc­tu­at­ed by light­ning strikes. Fur­ther east into Atlantic Coun­ty winds took down incred­i­ble amounts of trees.

This morn­ing trav­eled to Mays Land­ing, which was sched­uled to host a street fes­ti­val today. A few brave mer­chants like Brown­ies Squared opened with­out pow­er and made the best of it, sell­ing refrig­er­at­ed goods at half-price. But most of the town was deal­ing with trees across downed pow­er lines. Accord­ing to NBC40 Weath­er 162,000 house­holds are with­out pow­er – con­sid­er­ably more than were out in last year’s hurricane.

Links:
* http://​en​.wikipedia​.org/​w​i​k​i​/​D​e​r​e​cho
* https://​twit​ter​.com/​n​b​c​4​0​w​e​a​t​h​e​r​/​s​t​a​t​u​s​/​2​1​9​0​7​8​6​6​2​5​3​0​6​7​8​784

Visit to Vineland Mennonite Church

September 27, 2010

Yes­ter­day the fam­i­ly vis­it­ed Vineland NJ Men­non­ite Church.

We were com­ing after 8:30 Mass at Julie’s church and arrived a few min­utes before the wor­ship ser­vice while they were doing their reli­gious edu­ca­tion pro­gram. But the dis­tinc­tion between reli­gious ed and wor­ship was min­i­mal, almost non-existent. Atten­dance at both was near-universal (about 110 total) and much of the wor­ship itself was reli­gious edu­ca­tion. There was a series of 15 min­ute’ish ser­mons (deliv­ered by var­i­ous men), bro­ken up by some four-part a capel­la singing (beau­ti­ful), recita­tions from a Bible verse they were mem­o­riz­ing and kneel­ing prayer (a sur­prise the first time, as they all spin around sud­den­ly to face the back, kneel and pray).

blankIt’s prob­a­bly one of the most reli­gious­ly con­sci­en­tious com­mu­ni­ties I’ve seen. A lot of the ser­vice involved review­ing belief struc­ture. Their book of dis­ci­pline is very slim, not much more than a tract, but it’s some­thing they use and they spent part of the time read­ing from it. Much of the wor­ship hour was meant to rein­force who they were, why they were and how they were – to explain over and over why they led their dis­tinc­tive life. Theirs is a vol­un­tary asso­ci­a­tion for those who agree to fol­low the author­i­ty of the group’s teach­ings. I sus­pect that every adult in the room could give a detailed pre­sen­ta­tion on con­ser­v­a­tive Men­non­ite faith and give detailed answers about points of doc­trine. At the risk of insert­ing my own opin­ion I will ven­ture that the wor­ship ser­vice felt a bit dry (as Julie said, there was­n’t a ounce of mys­ti­cism in the whole pro­ceed­ing) but I don’t think the mem­bers there would feel offend­ed by this obser­va­tion. Excit­ing the sens­es is less impor­tant than review­ing the val­ues and liv­ing the moral life.

Visu­al­ly, the group is strik­ing. Every man in the room wore a long-sleeved white dress shirt but­toned all the way up, dark pants and black shoes; all had short hair and only one or two had facial hair. I was more dis­tinc­tive­ly plain in my broad­falls and sus­penders but the effect of sixty-or-so men and young boys all dressed alike was visu­al­ly stun­ning. Like a lot of plain peo­ples, the women were more obvi­ous­ly plain and all but one or two wore lightly-colored cape dress­es and head cov­er­ings (I lat­er learned that the excep­tions were new­com­ers who weren’t yet mem­bers). Seat­ed was seg­re­gat­ed, women on the left, men on the right. Gen­der roles are very clear. There were kids – lots of kids – all around, and a big focus of the ser­mons was fam­i­ly liv­ing. One extend­ed ser­mon focused on dis­cern­ing between pro­vid­ing well for one’s fam­i­ly vs. greed and the bal­ance between work­ing hard for your fam­i­ly vs. giv­ing up some things so you can spend time with them. Kids were present through­out the ser­vice and were rel­a­tive­ly well behaved.

The church itself was called a meet­ing­house and was plain – no cross­es of course. Peo­ple sat in pews and there was a raised area up front for min­is­ters and elders. The build­ing dou­bled as a school­house dur­ing the week and its school­rooms had a lot of Rod and Staff books, famil­iar from our own home school­ing. A mem­ber described the school as one leg of the three-legged stool, along with church and fam­i­ly. If any one part of the equa­tion was lack­ing in some way, the oth­er two could help insure the child’s moral wel­fare. School was free for church mem­bers but was open on a tuition basis to non-Mennonites. These out­siders were required to make cer­tain lifestyle choic­es that would insure the school stayed rel­a­tive­ly pure; the most impor­tant require­ment was that the fam­i­ly not have a tele­vi­sion at home.

My reg­u­lar read­ers will have one ques­tion on their mind right about now: did any­one invite us to lunch? Why yes they did! We did­n’t even have to prompt it. We knew a cou­ple there – M and J, who run a restau­rant in the local farmer’s mar­ket, a favorite Sat­ur­day morn­ing stop for us. They took us under their wing when they rec­og­nized us, sit­ting with us dur­ing wor­ship and then show­ing us the school. J said that if we came back again we could come over for lunch. Then she back­tracked and offered that we could come now, explain­ing that the church had had recent dis­cus­sions over whether it was too pushy to ask first-time atten­ders to lunch or whether they should restrain them­selves and invite them on the sec­ond vis­it. Wow, a church that thinks about this?!

So we fol­lowed them to their place for lunch. It was a won­der­ful oppor­tu­ni­ty to ask more ques­tions and get to know one anoth­er. Meals are impor­tant. Julie and I had won­dered why there were Men­non­ites in Vineland NJ of all places – and two Men­non­ite church­es at that! Short sto­ry is that there had been a civil­ian pub­lic ser­vice facil­i­ty in Vineland for con­sci­en­tious objec­tors and Lancaster-area Men­non­ites decid­ed that “the boys” sta­tioned there need­ed the ground­ing of a local church com­mu­ni­ty (appar­ent­ly oth­er C.O. camps were scenes of debauch­ery – Men­non­ite drag rac­ing in Col­orado Springs was cit­ed). This became Nor­ma Men­non­ite Church, which still exists and is anoth­er local church I’ve been mean­ing to vis­it for years (hi Mandy!). In the 1960s, there was a great round of lib­er­al­iza­tion among Men­non­ites, an unof­fi­cial aban­don­ment of the dis­tinc­tives cod­i­fied in their books of dis­ci­plines. Many church­es split and the Vineland Church was formed by those mem­bers of Nor­ma who want­ed to main­tain the discipline.

blankThis prob­a­bly explains the strong focus on the rules of the dis­ci­pline. For those want­i­ng more of the his­to­ries, I com­mend Stephen Scot­t’s excel­lent “An Intro­duc­tion to Old Order and Con­ser­v­a­tive Men­non­ite Groups” along with any­thing else Stephen Scott has writ­ten. The Vineland con­gre­ga­tion is part of the East­ern Penn­syl­va­nia Men­non­ite Church con­fer­ence, pro­filed on pages 173 – 176. A lot of the Men­non­ite issues and splits are echoed among Friends and we’d do well to under­stand these cousins of ours.

The result is a church that’s big on group prac­tice: the dress, the lifestyle. M. told me that they don’t believe in the­ol­o­gy but in Bib­li­cism. He explained that they don’t think the Bible con­tains the word of God but instead that it is the Word of God and he paused to let the dis­tinc­tion sink in. The Bible is not to be inter­pret­ed but read and fol­lowed, with spe­cial atten­tion giv­en the gospels and the let­ters of Paul.

So no, I’m not going to go Con­ser­v­a­tive Men­non­ite on you all. I have a TV. My pro­fes­sion is web design (they’re not into the inter­net, natch). I’m mar­ried to a pracitic­ing Catholic (I don’t know how they would bend on that) and at this point my brain is wired in a curi­ous, out­ward way that would­n’t fit into the nor­ma­tive struc­tures of a group like this. Doctrinally-speaking, I’m a Friend in that I think the Word of God is the Inward Christ’s direct spir­it and that the Bible needs to be read in that Light. There’s a lot of peo­ple who would­n’t fit for var­i­ous rea­sons, peo­ple who I would want in my church (they main­tain a hard line against remar­riage after divorce and I did­n’t even ask about gay issues). But I have to admit that the process and struc­ture puts togeth­er a real­ly great com­mu­ni­ty of peo­ple. They’re hard-working, kind, char­i­ta­ble and not near­ly as judg­men­tal as you might imag­ine – in prac­tice, less judg­men­tal than a lot of pro­gres­sive reli­gious peo­ple I know. Non-resistance is one of the pil­lars of their prac­tice and they were gen­uine­ly inter­est­ed in Julie’s Catholic church and my expe­ri­ences among Friends and we talked a fair bit about Islam.

Nor­mal­ly I’d give a big thanks to the church and M & J here, except I know they won’t read this. I am grate­ful to their kind­ness in shar­ing their church, beliefs and fam­i­ly meal with us.

Alliance Cemetery

July 28, 2009

Alliance CemeteryI was hired to redesign the web­site of a ceme­tery that rep­re­sents a fas­ci­nat­ing slice of South Jer­sey his­to­ry. In the 1880s, a group of Jews escaped Russ­ian pogroms, came to Amer­i­ca and start­ed a “return to the soil” move­ment that led to the estab­lish­ment of an agri­cul­tur­al colony in the small Salem Coun­ty cross­roads of Nor­ma, New Jer­sey. Before long they estab­lished Alliance Cemetery.

The new Alliance web­site high­lights the entrance gate. The ceme­tery has hired a sur­vey­ing com­pa­ny to do a detailed map of the plots and we hope to add this in with a Google Maps mash-up when the data becomes avail­able. A detailed his­to­ry and pho­tos are also in the works.

The design is hand-coded from scratch and is prob­a­bly the most taste­ful design of my port­fo­lio. The pages them­selves are editable by the client using Cushy­CMS and the Direc­tions page has an inte­grat­ed Google Map.

Vis­it: Alliance​Ceme​tery​.com

Impromput Hammonton area Friends worship

March 13, 2009

My F/friend Raye Hodg­son is tak­ing a train from Con­necti­cut to South Jer­sey next week for a vis­it, and locals and would-be vis­i­tors are invit­ed to my house for some wor­ship! Raye’s involved with Ohio Con­ser­v­a­tive and New Eng­land Friends and seems to be doing a cool sus­tain­able agri­cul­ture project these days (which I did­n’t know except for Google!)

It’s next Thurs­day, the 19th at 7:30pm in Ham­mon­ton. If you want to join but don’t have my address just send me an email and I’ll pro­vide details. There’s also a Face­book event list­ing for this. If enough peo­ple are inter­est­ed we can have more occa­sion­al Conservative/Convergent/Emergent Quak­er­ly wor­ship in this part of South Jer­sey! If you can’t make it but are intrigued by the idea, let me know and I’ll keep you in the loop. 

UPDATE: The wor­ship went well, about half a dozen peo­ple showed up. If you want to be alert­ed to any follow-up wor­ship oppor­tu­ni­ties in the Ham­mon­ton area send me an email and I’ll add you to my list. 

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The ascent of Apple Pie Hill

September 30, 2007

Yes­ter­day the kids and I took a road trip to Apple Pie Hill, a sum­mit of loose grav­el that tow­ers over the South Jer­sey pinelands from a dizzy­ing height of 209 feet above sea lev­el. A fire watch tow­er on the sum­mit adds anoth­er few dozen feet, enough to get a vis­i­tor over the tree­tops. On a clear day it’s said you can see the sky­lines of Atlantic City and Philadel­phia. For­tu­nate­ly for me it was an quin­tes­sen­tial­ly beau­ti­ful­ly fall day – clear and crisp. It was easy to spot the cities, both thirty-two miles away (most­ly to the south and most­ly to the west respec­tive­ly) and here’s blowups of the two resul­tant photos:
Trip to Pine Barren's famous Apple Pie Hill
Sand road to Apple Pie Hill Trip to Pine Barren's famous Apple Pie Hill Trip to Pine Barren's famous Apple Pie Hill Trip to Pine Barren's famous Apple Pie Hill
More pic­tures, from left: Sand road to the hill, the fire tow­er, the view down through the steps of the tow­er (the kids were left in the car), two year old Fran­cis eager but thwart­ed attempt to repeat Papa’s climb up tow­er. Click indi­vid­ual pho­tos for enlarged and geo­t­agged ver­sions. More pho­tos of this and out stopover at Atsion lat­er in the day on yes­ter­day’s Flickr page.

For those inter­est­ed in repeat­ing our jour­ney, here’s a map show­ing our route up and back. I was most­ly wing­ing it, depend­ing on these direc­tions from NJPines​land​sand​Down​Jer​sey​.com start­ing from near­by Chatsworth NJ, self-styled “Cap­i­tal of the Pine Barrens.” 



Oth­er map views: View Larg­er Map | Satel­lite with Route Map