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.

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

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

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

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).

It’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.

This 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.