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.

  • Bob Cook

    dont allow the small click of elmer pool to reflect on the
    elmer com­mu­ni­ty…

    • Lisa DiS­te­fano Han­ni­gan

      I don’t believe any­one said it did. It’s a clique, not even the entire pool com­mu­ni­ty.

  • Melin Da Lee

    It is sad. How­ev­er, I did wit­ness the child’s behav­ior and it was alarm­ing and threat­en­ing. I’ve worked with chil­dren with autism. I am not say­ing I am an expert, but the dis­re­spect was some­thing I’ve nev­er seen. There are always 2 sides to every sto­ry. I am pray­ing for the fam­i­ly. Maybe coun­sel­ing the fam­i­ly before ask­ing them to be removed would have been bet­ter? Also, it doesn’t sound as if they were asked to not join next year, just take a break for the rest of the year. Again, pray­ing for the fam­i­ly. Julie is a won­der­ful plea­sure!

    • I don’t excuse Francis’s behav­ior. Not in the least. He can be dif­fi­cult. He was pulling tiles, splash­ing peo­ple and talk­ing back against rules. He was doing this weird bub­bly mouth thing like he was going to spit on his way out. He embar­rass­es us on a dai­ly basis. On the oth­er hand, you prob­a­bly aren’t aware of some of the con­text. There are ways of esca­lat­ing his pan­ic, fight-or-flight respons­es, and this par­tic­u­lar pool man­ag­er has been butting heads and esca­lat­ing with him all year. As coun­ter­point, last sum­mer we had some inci­dent where Fran­cis talked back after being told not to run on the pave­ment. I was besides myself with mor­ti­fi­ca­tion, doing my whisper-bark to get him over to me (“Fran­cis!”). Bev was on duty, saw my pan­icked face, and calm­ly replied, “It’s okay, he’s stopped now.” She looked across the pool at him. “That one, he’s my spe­cial project.” OMG, I teared up right then and there. That’s what being fam­i­ly is about.

      Also, of course they should have coun­seled us. There’s lots of ways we could have worked togeth­er to make this sit­u­a­tion bet­ter. After 10 years of expe­ri­ence with Fran­cis, we’d be hap­py to brain­storm ways to help him man­age the pool envi­ron­ment. I don’t know where you’re get­ting your infor­ma­tion (or how you weren’t lis­ten­ing at the fence line along with every oth­er pool par­ent) but VP Eric Kern very much told us to nev­er return — repeat­ed­ly and loud­ly. He said he was speak­ing on behalf of the board, and pres­i­dent Sam Wheaton didn’t dis­pute this when he refused to talk with us on the phone last night. There are clear pro­to­cols for deal­ing with dif­fi­cult sit­u­a­tions in the ESC bylaws but Sam and Eric seem able to dis­pense with them with­out con­se­quence. That’s not the sign of healthy gov­er­nance. We’ve pri­vate­ly heard that there have been oth­er inci­dents, also han­dled with­out regard to bylaws and obvi­ous­ly things are being said about us behind our back (in con­trast, every­thing we’ve said we’ve said pub­licly; I have a per­son­al tes­ti­mo­ny to be trans­par­ent about all of my com­mu­ni­ca­tions, espe­cial­ly in times of con­flict, and keep all blog and Face­book posts pub­licly vis­i­ble).

      I’ve worked as a com­mu­ni­ty orga­niz­er and non­prof­it con­sul­tant and in my expe­ri­ence when an orga­ni­za­tion is run as a pri­vate clique with­out regard to process or its own bylaws, s**t usu­al­ly fol­lows.

  • Ter­ri Quinn

    I am so sor­ry! Please remem­ber that such a deci­sion is not made by the mem­ber­ship, but by cer­tain indi­vid­u­als! I am a mem­ber of the pool, but my kids are grown and we are there on a part time basis! In my heart, I know you can trust the peo­ple who make up the mem­ber­ship. I hope this all works out!

  • Ania Byrd

    I think you should call chan­nel 10 news and have them inves­ti­gate and call these peo­ple out on the news for dis­crim­i­na­tion i bet they will appol­o­gize and off you a mem­ber­ship because they were wrong to tell you nev­er to come back.

  • Adri­enne Mills

    Melin not all chil­dren with Autism have the same behav­ioral traits. I have friends that have chil­dren with Autism. The Elmer pool asso­ci­a­tion should be ashamed of them­selves.

  • In the spir­it of trans­paren­cy, I’ll share that I just delet­ed a com­ment that was par­tic­u­lar­ly judg­men­tal and nasty, from anoth­er pool autism mom who said this was all poor par­ent­ing. She mis­took my not esca­lat­ing things in the moment yes­ter­day (which would have been real­ly *real­ly* bad) with not dis­ci­plin­ing Fran­cis at all. She went on to cite a long list of fam­i­ly infrac­tions over the past three months. She wouldn’t have seen most of these; this was a group-list made by at least half a dozen peo­ple who must have been watch­ing us and talk­ing about us behind our backs.

    Wow. There is a group dynam­ic where some­one becomes the out­sider that it’s okay to hate on. The clique starts to com­pile sto­ries and share notes. Every inci­dent, no mat­ter how momen­tary or triv­ial is added to a list. It’s a tox­ic envi­ron­ment, hate breed­ing hate as more peo­ple get drawn in. I’ve seen it before but it still stuns me. Espe­cial­ly com­ing from adults. I’m sure this list is being shared pri­vate­ly on Face­book and that peo­ple we know and love are see­ing it. Human­i­ty just real­ly sucks some­times.

    • geo­jlc

      I’m so sor­ry you have to deal with that. I haven’t had to work with an autis­tic fam­i­ly mem­ber, but I have had to deal with the tox­ic clique behav­ior thrown at me. It is not fun and my heart breaks for you and your fam­i­ly.

  • Kstill

    I wish I could offer you sup­port and encour­age­ment. You are not alone. <3

  • Michael White

    This is an out­rage you need to take this to court find a lawyer thake on these two morons who lack com­pas­sion

  • Michael White

    Take these morons to court

  • Beth

    Wow, what ugli­ness. Speak­ing as a par­ent of a 28 year old autis­tic son, soci­ety gives lip ser­vice to being under­stand­ing and accom­mo­dat­ing, but the real­i­ty is, our chil­dren are still expect­ed to act like every­one else. 

  • Jill Reis­tle

    I have a daugh­ter on Rac­coon Val­ley swim team and belong tot hat pool com­mu­ni­ty. The swim coach is a spe­cial edu­ca­tion instruc­tion­al assis­tant and ver the years has worked with sev­er­al swim­mers with autism and asperg­erg­ers on the team. The team is very wel­com­ing. I would encour­age you to vis­it the pool and make con­tact with the coach about join­ing. Swim­ming is such a won­der­ful sport and sum­mer swim­ming is such an awe­some oppor­tu­ni­ty for everyone.Please don’g give up on your dream of see­ing your son at his senior recog­ni­tion