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.

Saying goodbye to Mom 

August 15, 2015

We had a small fam­i­ly memo­r­i­al ser­vice for my moth­er Liz Klein in the his­toric Rit­ten­house­town sec­tion of Philadel­phia, fol­lowed by a scat­ter­ing of ash­es into the waters of her beloved Paper Mill Run (aka Mono­shone Creek), a trib­u­tary of the Wis­sahick­on. After­wards we all gath­ered at Sazon, a great Venezue­lan restau­rant on Spring Gar­den Street with yum­my chocolates.

“My secretary just walked in wearing pants.… and she looks terrific!” and other mom stories

August 14, 2015
2015-08-14 12.53.23
My moth­er’s death notice is in today’s Philadel­phia Inquirer.

Here’s anoth­er instal­la­tion of mom sto­ries, orig­i­nal­ly writ­ten for a longer obit­u­ary than the one run­ning in today’s paper.

A sin­gle par­ent, she earned an asso­ciates degree at Rid­er Col­lege in Tren­ton and worked as a sec­re­tary at a num­ber of Philadelphia-area based orga­ni­za­tions, include Wom­en’s Med­ical Col­lege and the Pres­by­ter­ian Board of Pub­li­ca­tions. In the mid-1960s she became an exec­u­tive sec­re­tary at the newly-formed Colo­nial Penn Life Insur­ance Com­pa­ny. An office fem­i­nist, she liked recount­ing the sto­ry of the day in the 1970s when the women of the office unit­ed to break the dress code by all wear­ing pant suits. A senior vice pres­i­dent was on the phone when she walked into his office and is said to have told his caller “My sec­re­tary just walked in wear­ing pants.… and she looks terrific!”

When Colo­nial Penn lat­er start­ed an in-house com­put­er pro­gram­mer train­ing pro­gram, she signed up imme­di­ate­ly and start­ed a sec­ond career. She approached pro­grams as puz­zles and was espe­cial­ly proud of her abil­i­ty to take oth­er pro­gram­mers’ poorly-written code and turn it into effi­cient, bug-free software.

In the ear­ly 1990s, she moved into her own apart­ment in Jenk­in­town, Pa. She reclaimed a short­ened form of her maid­en name and swapped “Bet­sy” for “Liz.” Dur­ing this time she became a com­mit­ted atten­der at Abing­ton Friends Meet­ing. As clerk of its peace and jus­tice com­mit­tee, she worked to build the con­sen­sus need­ed for the meet­ing to pro­duce a land­mark state­ment on repro­duc­tive rights. As soon as it was passed she said, “next up, a minute on same-sex mar­riage!” In the late 90s, that was still con­tro­ver­sial even with LGBTQ cir­cles and I imag­ine that even the pro­gres­sive folks at Abing­ton were dread­ing the thought she might put this on the agenda!

In her late 60s, she bought her first house, in Philadel­phi­a’s Mount Airy neigh­bor­hood. She loved fix­ing it up and babysit­ting her grand­chil­dren. She nev­er made any strong con­nec­tions with any of the near­by Quak­er Meet­ings only attend­ing wor­ship spo­rad­i­cal­ly after the move. When she was diag­nosed with Alzheimer’s Dis­ease in 2010, she took the news with dig­ni­ty. She moved into an inde­pen­dent liv­ing apart­ment in Atco, N.J. and con­tin­ued an active lifestyle as long as possible.

Up Into The Cherry Tree

July 24, 2015
Robert Louis Stevenson's A Child's Garden of Verses
Robert Louis Steven­son’s A Child’s Gar­den of Verses

My moth­er died a few days ago. While I’m over­whelmed with the mes­sages of prayers and con­do­lences, at least at some lev­el it feels like cheat­ing to accept them too ful­ly. This isn’t a new con­di­tion. This is just the final moment of a slow-motion death.

A lit­tle over five years ago my moth­er was for­mal­ly diag­nosed with Alzheimer’s. It was quite brave of her to get the test­ing done when she did. This had always been her most-feared sce­nario for aging. Grow­ing up, we had befriend­ed an active elder­ly neigh­bor who had gen­tly died in her sleep after a minor slip on some ice. My mom thought that was the best exit ever. She swore Mrs. Gold­smith had come to her in a dream the next night to con­grat­u­late her­self, say­ing “See, I told you I was lucky!” For years after­wards, my moth­er con­vinced her­self that she would go in a sim­i­lar­ly ele­gant way.

My mom, Liz, must have sensed that Alzheimer’s was a pos­si­bil­i­ty when she sched­uled that doc­tor’s vis­it. The news didn’t come as much of a sur­prise to us fam­i­ly. I had been jok­ing for years that my mom seemed to have only twen­ty sto­ries that she kept on rota­tion. After she read a study that cross­word puz­zles keep your brain sharp as we age, she became an obses­sive cross­word puz­zler; when the Sudoku craze hit, she was right on top of it. She had brave­ly bought her first house in her late 60s. How proud she was. At the time she let us all know, repeat­ed­ly, that she would be leav­ing it “in a box.” Caulk­ing trim, replac­ing win­dows, and trou­bleshoot­ing a mud room leak that defied a dozen con­trac­tors became her occu­pa­tion, along with vol­un­teer­ing and watch­ing grand­kids. But by 2010, she must have known she wasn’t going to have Mrs. Goldsmith’s luck. It was time to adjust.

When she called to tell me the diag­no­sis, she couldn’t even use the A‑word. She told me her “brain was dying” and that the doc­tor was putting her on Ari­cept. A quick Google search con­firmed this was an Alzheimer’s drug and a call with the doc­tor lat­er that after­noon helped map out the road ahead.

Alzheimer’s is a slow-motion death. She’s been dis­ap­pear­ing from us for a long while. Reg­u­lar out­ings became less fre­quent till we couldn’t even take her out to a near­by restau­rant for her birth­day. As words dis­ap­peared and speech began fal­ter­ing, I’d show her recent kid pho­tos on my phone and tell sto­ries to fill the emp­ty­ing space. Even­tu­al­ly she stopped show­ing inter­est even in this. On my last reg­u­lar vis­it with her, I brought the kids and we had lots of fun tak­ing pic­tures. Mom kept point­ing out at the phone’s dis­play as if it were a mir­ror. But con­ver­sa­tion was too dis­joint­ed and after a few min­utes, my kids start­ed wan­der­ing in ever widen­ing cir­cles look­ing for inter­est­ing but­tons and alarms to touch and pull and I had to round them up to leave.

In the past few weeks her for­get­ful­ness has extend­ed to eat­ing and swal­low­ing. Inter­ven­tion would only buy a lit­tle more time until she for­got how to breathe. Alzheimer’s is a one way trip.

On my last few vis­its she was most­ly sleep­ing. She’s was calm, preter­nat­u­ral­ly calm. Lying on her back, pale and peace­ful, she looked as if she might already be a body rest­ing in a cas­ket. Only the slight rise of sheets as she breathed gave away the news that she was still with us, if bare­ly. I felt awk­ward just sit­ting there. Some peo­ple are good in these kinds of sit­u­a­tions, but I self-consciously strug­gle. With lit­tle chance of inter­ac­tion, I struck on the idea of read­ing from a favorite book of poems that she had read to me on count­less nights as a child.  “Up into the cher­ry tree, who should climb but lit­tle me?” I don’t know if she heard me or pic­tured the cher­ry tree in her haze, but it was a way for us to be together.

The slow-motion nature of Alzheimer’s means she slept a lot until she didn’t. For rea­sons that go deep into biog­ra­phy, she was a won­der­ful­ly friend­ly per­son who didn’t have a lot of close friends any­more. It seems pecu­liar that one can walk upon the earth for so many decades and only have a dozen or so peo­ple notice your depar­ture. But then maybe that’s the norm for those who live deep into their eight­ies. Most of us will leave life with the same kind of qui­et rip­ples with which we entered.

Liz (Betsy) Klein(top) aka Mom

July 22, 2015

My mom Liz just passed away tonight. It’s not unex­pect­ed. And sad­ly, giv­en her health, it’s per­haps not even so trag­ic; she’s been declin­ing for years from Alzheimer’s and all but stopped eat­ing in recent weeks. I’m sure I’ll find voice to tell some sto­ries in the months ahead, but for now I’ll share some pic­tures. She would have turned 85 next month.

A note about names: she was born in late sum­mer 1930 as Eliz­a­beth Ann Klein­top. In her adult life she went as Bet­sy and took the last names of her part­ners. In her late 60s she decid­ed to take back a vari­a­tion of her last name and overnight Bet­sy Kel­ley became Liz Klein.