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.

The QuakerRanter Top-Five

December 28, 2013

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.

Wikifying Our Blogging

October 14, 2013

Con­tin­u­ing my recent post in reimag­in­ing blogs, I’m going to go into some con­tex­tu­al details lift­ed from the Quak­er pub­li­ca­tions with which I’m either direct­ly asso­ci­at­ed or that have some claim to my identity.

My blog at Quak­er Ranter dates back to the proto-blog I began in 1997 as an new home­page for my two year old “Non­vi­o­lence Web” project. The new fea­ture was updat­ed week­ly with excerpt­ed mate­r­i­al from mem­ber projects on Non​vi​o​lence​.org and relat­ed orga­ni­za­tions that already had inde­pen­dent web­sites. We didn’t have RSS or Twit­ter then but I would man­u­al­ly send out emails to a list; we didn’t have com­ments but I would pub­lish inter­est­ing respons­es that came by email. The work was relaunched with blog­ging soft­ware in 2003 and the voice became more indi­vid­ual and my focus became more Quak­er and tech.

The arti­cles then were like they are now: reverse­ly chrono­log­i­cal, with cat­e­gories, tag­ging, and site search­ing that allow old­er mate­r­i­al to be accessed. The most impor­tant source of archive vis­i­bil­i­ty is exter­nal: Google. Peo­ple can eas­i­ly find mate­r­i­al that is direct­ly rel­e­vant to a ques­tion they’re address­ing right now. In many instances, they’ll nev­er even click through to the site home­page, much less cat­e­gories, tags, etc. As I said in my last post, these first-time vis­i­tors are often try­ing to under­stand some­thing new; the great major­i­ty bounce off the page and fol­low anoth­er search result on a mat­ter of a few sec­onds, but some small but impor­tant per­cent­age will be ripe for new ideas and con­nec­tions and might be will­ing to try new associations.

But it’s ran­dom. I’m a bit of a nerd in my cho­sen inter­ests and have been blog­ging long enough that I gen­er­al­ly have at least a few inter­est­ing posts on any par­tic­u­lar sub-topic. Most of these have been inspired by col­leagues, friends, my wife, and ran­dom con­ver­sa­tions I’ve found myself in.

Some of the most mean­ing­ful blog posts – those with legs – have involved me inte­grat­ing some new thinker or idea into my world­view. The process will have start­ed months or some­times years before when anoth­er spir­i­tu­al nerd rec­om­mend­ed a book or arti­cle. In the faith world there’s always books that are obscure to new­com­ers but essen­tial for those try­ing to go deep­er into their faith. You’ll be in a deep con­ver­sa­tions with some­one and they’ll ask (often with a twin­kle in their eye) “have you read so-and-so?” (This cul­ture if shar­ing is espe­cial­ly impor­tant for Friends, who tra­di­tion­al­ly have no cler­gy or seminaries).

A major role of my blog has been to bring these sorts of con­ver­sa­tions into a pub­lic realm – one that can be Googled and fol­lowed. The inter­net has helped us scale-up this process and make it more avail­able to those who can’t con­stant­ly travel.

When I have real-world con­ver­sa­tions now, I often have recourse to cite some old blog post. I’m shar­ing the “have you read” con­ver­sa­tion in a way that can be eaves­dropped by hundreds.

But how are peo­ple who stum­ble in my site for the first time going to find this?

The issue isn’t just lim­it­ed to an obscure faith blog. Yes­ter­day I learned about a cool (to me) blog writ­ten by a dad who research­es and trav­els to neat nature spots in the area with his kids and writes up a post about what-to-see and kid-issues-to-be-aware-of. But when it’s a nice Sat­ur­day after­noon and I find myself in a cer­tain locale, how can I know if he’s been any­where near­by unless I go through all the archives or hope the search works or hope his blog’s cat­e­go­riza­tion tax­on­o­my is complete?

What I’m think­ing is that we could try to cre­ate meta index­es to our blogs in a wiki mod­el. Have a whole col­lec­tion of intro­duc­to­ry pages where we list and sum­ma­rize rel­e­vant arti­cles with links.

In the hey­day of SEO, I used to tag the heck out if posts and have the pages act as a sort of auto­mat­ed ver­sion of this, but again, this it was chrono­log­i­cal. And it was work. Even remem­ber­ing to tag is work. I would spend a cou­ple of days ignor­ing clients to metatag each page on the site, only to redo the work a few months lat­er with even more meta­da­ta com­plex­i­ty. Writ­ing a whole shad­ow meta blog index­ing the blog would be a major (and unend­ing task). It wouldn’t gar­ner the rush of imme­di­ate Face­book likes. But it would be supreme­ly use­ful for some­one want­i­ng to explore an issue of par­tic­u­lar inter­est to them at that moment.

And one more Quak­er aside that I think will nev­er­the­less be of inter­est to the more techie read­ers. I’ve described Quak­erism as a wiki spir­i­tu­al­i­ty. Exhib­it one is the reli­gious move­men­t’s ini­tial lack of creeds or writ­ten instruc­tion. Even our paci­fism, for which we’re most well known, was an uncod­i­fied tes­ti­mo­ny in the ear­li­est years.

As Friends gained more expe­ri­ence liv­ing in com­mu­ni­ty, they would pub­lish advices – short snip­pets of wis­dom that were collectively-approved using con­sen­sus deci­sion mak­ing. They were based on expe­ri­ence. For exam­ple, they might find that mem­bers who abused alco­hol, say, or repeat­ed­ly test­ed the dress code might cause oth­er sorts of prob­lems for the com­mu­ni­ty and they’d minute a warn­ing against these practices.

These advices were writ­ten over time; as more were approved it became bur­den­some to find rel­e­vant advices when some issue start­ed tear­ing up a con­gre­ga­tion. So they were col­lect­ed into books – unof­fi­cial at first, lit­er­al­ly hand-copied from per­son to per­son. These even­tu­al­ly became offi­cial – pub­lished “books of dis­ci­plines,” col­lec­tions of the col­lec­tive wis­dom orga­nized by top­ic. Their pur­pose and scope (and even their name) has changed over the ensu­ing cen­turies but their impulse and ear­ly orga­ni­za­tion is one that I find use­ful when think­ing about how we could rethink the cat­e­go­riza­tion issues of our twen­ty first cen­tu­ry blogs and com­ment­ing systems.

Visual storytelling through animated gifs and Vine

June 27, 2013

NPR’s Plan­et Mon­ey recent­ly ran an arti­cle on glass recy­cling, How A Used Bot­tle Becomes A New Bot­tle, In 6 Gifs. The Gif part is what intrigued me. A “gif” is a tightly-compressed image for­mat file that web design­ers leaned on a lot back in the days of low band­width. It’s espe­cial­ly good for designs with a few dis­creet col­ors, such as cor­po­rate logos or sim­ple car­toons. It also sup­ports a kind of prim­i­tive ani­ma­tion that was com­plete­ly overused in the late 90s to give web­pages fly­ing uni­corns and spin­ning globes.

Ani­mat­ed gifs have grown up. They make up half the posts on Tum­blr. They are often derived from fun­ny scenes in movies and come with humor­ous cap­tions. The Plan­et Mon­ey piece uses them for sto­ry­telling: text is illus­trat­ed by six gifs show­ing dif­fer­ent parts of the recy­cling process. The move­ment helps tell the sto­ry – indeed most of the shots would be visu­al­ly unin­ter­est­ing if they were static.

The short loops reminds me of Vine, the six-second video ser­vice from Twit­ter which I’ve used a lot for sil­ly kid antics. They can also tell a sim­ple sto­ry (they’re par­tic­u­lar­ly well suit­ed to repet­i­tive kid antics: up the steps, down the slide, up the steps, down the slide, up…).

In my work with Friends Jour­nal I’ve done some 7 – 12 minute video inter­views with off-site authors using Google Hang­outs, which essen­tial­ly just records the video con­ver­sa­tion. It’s fine for what we use it for, but the qual­i­ty depends a lot on the equip­ment on the oth­er end. If the band­width is low or the web­cam poor qual­i­ty, it will show, and there are few options for post-production edit­ing. But hon­est­ly, this is why I use Hang­outs: a short web-only inter­view won’t turn into a week­long project.

Pro­duc­ing high-quality video requires con­trol­ling all of the equip­ment, shoot­ing ten times more footage than you think you’ll need, and then hours of work con­dens­ing and edit­ing it down to a sto­ry. And after all this it’s pos­si­ble you’ll end up with some­thing that does­n’t get many views. Few Youtube users actu­al­ly watch videos all the way through to the end, drift­ing away to oth­er inter­net dis­trac­tions in the first few minutes.

I like the com­bi­na­tion of the sim­ple short video clips (whether Vine or ani­mat­ed gif) wed­ded to words. My last post here was the very light-weight sto­ry about a sum­mer after­noon project. Yes­ter­day, I tried again, shoot­ing a short ani­mat­ed gif of Tibetan monks vis­it­ing a local meet­ing­house. I don’t think it real­ly worked. They’re con­struct­ing a sand man­dala grain-by-grain. The small move­ments of their fun­nel sticks as sand drops is so small that a reg­u­lar sta­t­ic pho­to would suf­fice. But I’ll keep exper­i­ment­ing with the form.

Fifteen years of blogging

November 15, 2012

Even I’m a bit shocked by the title of this post. Have I real­ly been blog­ging for fif­teen years? I keep double-checking the math but it keeps adding up. In Novem­ber 1997 I added a fea­ture to my two-year-old peace web­site. I called this new enti­ty Non­vi­o­lence Web Upfront and updat­ed it week­ly with orig­i­nal fea­tures and curat­ed links to the best online paci­fist writ­ing. I wrote a ret­ro­spec­tive of the “ear­ly blog­ging days” in 2005 that talks about how it came about and gives some con­text about the proto-blogs hap­pen­ing back in 1997.

But I could arguably go back fur­ther than 15 years. In col­lege, my friend Brni and I start­ed an alter­na­tive print mag­a­zine called VACUUM. It came out week­ly. It had a mix of opin­ion pieces and news from all over. Famil­iar, huh? Columns were made up from a dot matrix print­er and past­ed down with scotch tape, with head­lines scrawled out with a sharpie. The ethos was there. Next April will mark its Sil­ver Jubilee.

What’s most strik­ing is not the huge leaps of tech­nolo­gies, but the single-mindedness of my pur­suits all these years. There are cross-decade echos of themes and ways of pack­ag­ing pub­li­ca­tions that con­tin­ue in my work as edi­tor of Friends Jour­nal.

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

65% of Hollywood revenue comes from technologies the industry said would kill th…

January 27, 2012

65% of Hol­ly­wood rev­enue comes from tech­nolo­gies the indus­try said would kill them.

Reshared post from +Bri­an Fitzpatrick

MPAA and the film indus­try are “real­ly about fight­ing innovation”

This info­graph­ic tells the tale pret­ty clearly.

http://​mata​dor​net​work​.com/​c​h​a​n​g​e​/​i​n​f​o​g​r​a​p​h​i​c​-​w​h​y​-​t​h​e​-​m​o​v​i​e​-​i​n​d​u​s​t​r​y​-​i​s​-​s​o​-​w​r​o​n​g​-​a​b​o​u​t​-​s​o​pa/

#sopa

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Info­graph­ic: Why the movie indus­try is so wrong about SOPA | Mata­dor Network
It’s not the first time the MPAA has fought new technology.