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.

The QuakerRanter Top-Five

Outreach, Family, Pacifism, and Blog Culture

At year’s end it’s always inter­est­ing to look back and see which arti­cles got the most vis­its. Here are the top-five Quak​er​Ran​ter​.org blog posts of 2013.

1. Outreach gets people to your meetinghouse / Hospitality keeps people returning

This grew out of a inter­est­ing lit­tle tweet about search engine opti­miza­tion that got me think­ing about how Friends Meet­ings can retain the curi­ous one-time visitors.

2. Tom Heiland

My father-in-law died in Jan­u­ary. These are few pic­tures I put togeth­er while Julie was still at the fam­i­ly home with the close rel­a­tives. Thanks to our friends for shar­ing a bit of our life by read­ing this one. He’s missed.

3. Expanding Concepts of Pacifism

A look at Friends tes­ti­monies and the dif­fi­cul­ties of being a fair-trade paci­fist in our hyper-connected world today. I think George Fox and the ear­ly Friends were faced with sim­i­lar chal­lenges and that our guide can be the same as theirs.

4. Rethinking Blogs

A num­ber of new ser­vices are try­ing to update the cul­ture of blog­ging. This post looked at com­ments; a sub­se­quent one con­sid­ered how we might reor­ga­nize our blogs into more of a struc­tured Wiki.

5. Iraq Ten Years Later: Some of Us Weren’t Wrong

This year saw a lot of hang wring­ing by main­stream jour­nal­ists on the anniver­sary of the Iraq War. I didn’t have much patience and looked at how dis­sent­ing voic­es were reg­u­lar­ly locked out of debate ten years ago – and are still locked out with the talk that “all of us” were wrong then.

I should give the caveat that these are the top-five most-read arti­cles that were writ­ten this year. Many of the clas­sics still out­per­form these. The most read con­tin­ues to be my post on unpop­u­lar baby names (just today I over­heard an expec­tant moth­er approv­ing­ly going through a list of over-trendy names; I won­dered if I should send her the link). My post on how to order men’s plain cloth­ing from Gohn’s Broth­ers con­tin­ues to be pop­u­lar, as does a report about a trip to a leg­endary water hole deep in the South Jer­sey pines.

Are We More Than Our Demographics?

One of the things that is intrigu­ing me late­ly is the nature of Quak­er debate.  There are half a dozen seemingly-perennial polit­i­cal issues around which Friends in my cir­cles have very strong opin­ions (these include abor­tion, nuclear pow­er, and the role of Friends in the trou­bles of Israel/Palestine) . We often jus­ti­fy our posi­tions with appeals to our Quak­er faith, but I won­der how often our opin­ions could be more accu­rate­ly pre­dict­ed by our demo­graph­ic profile?


How many of your polit­i­cal posi­tions and social atti­tudes could be accu­rate­ly guessed by a savvy demog­ra­ph­er who knew your date of birth,  postal code,  edu­ca­tion and fam­i­ly income? I’d guess each of us are far more pre­dictable than we’d like to think.If true,  then what role does our reli­gious life actu­al­ly play?

Reli­gious beliefs are also a demo­graph­ic cat­e­go­ry,  grant­ed, but if they only con­firm posi­tions that could be just as actu­al­ly pre­dict­ed by non-spiritual data, then doesn’t that imply that we’ve sim­ply found (or remained in) a reli­gious com­mu­ni­ty that con­firms our pre-existing bias­es? Have we cre­at­ed a faith in our own image? And if true, is it real­ly fair to jus­ti­fy our­selves based on appeals to Quak­er values?

The “polit­i­cal” Quak­er writ­ings I’m find­ing most inter­est­ing (because they’re least pre­dictable) are the ones that stop to ask how Quak­er dis­cern­ment fits into the debate. Dis­cern­ment: one could eas­i­ly argue that Quak­er open­ings and tools around it are one of our great­est gifts to human spir­i­tu­al­i­ty.  When we build a wor­ship com­mu­ni­ty based on strict adher­ence to the imme­di­ate prompt­ing of the Holy Spir­it, the first ques­tion becomes fig­ur­ing out what is of-God and what is not.  Is James Nayler, rid­ing Jesus-like into Bris­tol, a prophet or a nut?

When we go deep into the ques­tions,  we may find that the answers are less impor­tant than the care we take to reach them.  Wait­ing for one anoth­er,  hold­ing one another’s hand in love despite dif­fer­ences of opin­ion, can be more impor­tant than being the right-answer ear­ly adopter. How do you step back from easy answers to the thorny ques­tions? How do you poll your­self and that-of-God in your­self to open your eyes and ears for the poten­tial of surprise?