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.

Hammonton Food Trucks

June 12, 2015

From the first Ham­mon­ton Food Truck Fes­ti­val. Cool stuff but the lines are way too long for a sin­gle par­ent with four antsy kids.

One of our friends said the line waits were up to 1.5 hrs. I could just about have jumped on the express­way to Philly, got­ten some Fed­er­al Donuts, and made it back in that time. I like that Ham­mon­ton has made then edges of a hip­ster map but this is a bit sil­ly. We end­ed up get­ting frozen treats at the Wawa around the corner.

Desert temptations

July 31, 2013

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Yes­ter­day I was home with the kids on comp time and got to par­tic­i­pate in their reli­gion ses­sion (my wife keeps them to a sched­ule in the sum­mers and reli­gion makes for a qui­et half hour midday). 

My 9 year old was read­ing the pas­sage of Jesus’s temp­ta­tion in the desert found in Matthew 4. I find it such a relat­able sto­ry. No, no one with pointy ears and a red tail has offered me a king­dom late­ly, but there are a num­ber of nor­mal human ele­ments nonetheless. 

To start with, Jesus is fast­ing and liv­ing with­out shel­ter for forty days. I know I become less of the per­son I want to be when I’m hun­gry, tired, and stressed. The tempter also prof­fers a test to see if God cares. That too is famil­iar: how often do we want some­thing from close fam­i­ly and friends but hold back to see if it’s offered. “Oh, if they real­ly cared I wouldn’t have to remind them.” We do this with God too, con­fus­ing chang­ing states of for­tune with divine favor rather than wel­com­ing even hard times as a oppor­tu­ni­ty for growth and understanding. 

One of my favorite parts of the Lord’s Prayer is the plea that we not even be led to temp­ta­tion. There’s a cer­tain humil­i­ty to that. Jesus might be able to resist the sweet promis­es of the tempter even when cold and hun­gry, but I’d rather skip the tests. 

It’s hard enough liv­ing in this world in a state of humil­i­ty and coop­er­a­tion. None of us are per­fect, start­ing with me, and we all cer­tain­ly have plen­ty of room to grow. But it’s nice to know that we don’t have to face the tempter alone. God knows just how hard it can be and has our back. 

Resurrection with the Cross and Rabbi

April 11, 2012

Of course, that is not the part of the sto­ry that moti­vates me. I am not seek­ing to be abused and betrayed, let down by my best friends and hunt­ed by those in pow­er. I may rec­og­nize the neces­si­ty of suf­fer­ing, but by no means do I seek it out. I think most of us grav­i­tate towards the tri­umphant vic­to­ry and joy of Jesus\’ resurrection

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So here’s a G+ question

July 10, 2011

It seems cir­cles are curat­ed only by their cre­ator. What is some cir­cles were pub­licly list­ed with an opt-in but­ton for recip­i­ents (with an option­al approval step by the cir­cle creator). 

Here’s the exam­ple: a lot of my pho­to stream is end­less pic­tures of cute kids. Face­book friends who have friend­ed me for oth­er top­ics have to wade through that col­lec­tion. Some actu­al­ly like them – our friend­ships aren’t sin­gle issue and they appre­ci­ate glimpses of the rest of my life. But with G+ it’s my job to fig­ure out which issue friends might want to be kid pic­ture friends. I don’t want to put them on a list they don’t like and essen­tial­ly spam them. Is there any G+ fea­tures I might use?

Google+: View post on Google+

Dusting off the Elders of Balby

January 28, 2010

One of the blue­prints for Quak­er com­mu­ni­ty is the “Epis­tle from the Elders at Bal­by” writ­ten in 1656 at the very infan­cy of the Friends move­ment by a gath­er­ing of lead­ers from York­shire and North Mid­lands, England.

It’s the pre­cur­sor to Faith and Prac­tice, as it out­lines the rela­tion­ship between indi­vid­u­als and the meet­ing. If remem­bered at all today, it’s for its post­script, a para­phrase of 2 Corinthi­ans that warns read­ers not to treat this as a form to wor­ship and to remain liv­ing in the light which is pure and holy. That post­script now starts off most lib­er­al Quak­er books of Faith and Practice. 

But the Epis­tle itself is well worth dust­ing off. It address­es wor­ship, min­istry, mar­riage, and how to deal in meek­ness and love with those walk­ing “dis­or­der­ly.” It talks of how to sup­port fam­i­lies and take care of mem­bers who were impris­oned or in need. Some of it’s lan­guage is a lit­tle stilt­ed and there’s some talk of the role of ser­vants that most mod­ern Friend would object to. But over­all, it’s a remark­ably lucid, prac­ti­cal and rel­e­vant doc­u­ment. It’s also short: just over two pages.

One of the things I hear again and again from Friends is the desire for a deep­er com­mu­ni­ty of faith. Younger Friends are espe­cial­ly drawn toward the so-called “New Monas­tic” move­ment of tight com­mu­nal liv­ing. The Bal­by Epis­tle is a glimpse into how an ear­li­er gen­er­a­tion of Friends addressed some of these same concerns.

ONLINE EDITIONS OF THE EPISTLE AT BALBY:
Quak­er Her­itage Press: qhpress​.org/​t​e​x​t​s​/​b​a​l​b​y​.​h​tml
Street Cor­ner Soci­ety: strecor​soc​.org/​d​o​c​s​/​b​a​l​b​y​.​h​tml
Wik­isource: en​.wik​isource​.org/​w​i​k​i​/​T​h​e​_​E​p​i​s​t​l​e​_​f​r​o​m​_​t​h​e​_​E​l​d​e​r​s​_​a​t​_​B​a​l​b​y​,​_​1​656

DISCUSSIONS:
Brook­lyn Quak­er post & dis­cus­sion (2005): brook​lyn​quak​er​.blogspot​.com/​2​0​0​5​/​0​3​/​e​l​d​e​r​s​-​a​t​-​b​a​l​b​y​.​h​tml