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.

Using apps to help kids with autism

February 12, 2012

Sounds like a ther­a­py that can get pret­ty expen­sive pret­ty quick­ly, and the arti­cle shares con­cerns about just how help­ful all of these might be. Still, I have to admit it’s pret­ty amaz­ing to watch my 6yo play­ing the read­ing games on reas​dingeg​gs​.com web­site and he’s pret­ty instinc­tive with the touch­screen of my smart phone.

Embed­ded Link

blank

Using apps to help treat autism | Macworld
Some par­ents of autis­tic chil­dren see ben­e­fits from the use of apps and tech­nol­o­gy; how­ev­er, experts raise concerns. 

Lead-painted toys? Aye-Yeash!

June 19, 2007

Trains & MessesThe Times has a fas­ci­nat­ing arti­cle on the rise of recalls on Chinese-made toys over the last few years. Two of our kid’s “Thomas and Friends” wood­en trains are part of the lat­est recall because of lead paint. We’ve long pre­ferred the met­al Thomas trains since 21-month old Fran­cis chews on the wood­en ones and gnaws their paint off.

We learned about the lead paint­ed Thomas’s on the same day that our fam­i­ly doc­tor told us that it was offi­cial­ly time to become con­cerned with Fran­cis’s slow speech devel­op­ment. When Theo was just a lit­tle old­er than Fran­cis is now we put togeth­er a dic­tio­nary of his vocab­u­lary. Fran­cis makes cute sounds and seems bright and curi­ous but he’s not even got­ten out a con­sis­tent mama or papa and we haven’t been able to fig­ure out a mean­ing for his most com­mon word (Aye – YEASH). He’s got an appoint­ment six months from now with spe­cial­ists at Wilm­ing­ton’s Nemours (that’s how backed up they are!).

We’re not blam­ing the trains — the lead ones we had were rel­a­tive­ly unpop­u­lar and have few signs of wear. And we’re not pan­ick­ing. My moth­er brush­es off all con­cern with the assured dec­la­ra­tion that kids learn to talk at lots of dif­fer­ent ages. She could cer­tain­ly be right of course: our doc­tor sent us to Nemours for Theo with the wor­ry that he had a big head. If Fran­cis does turn out to be a lit­tle “slow,” well then we’ll just take that as anoth­er les­son plan God has for us.