You go to a book club for one book, learn of a dozen more…

October 7, 2015

Jane-JacobsI’m just com­ing back from a book club (adult con­ver­sa­tion? But… but… I’m a par­ent… Real­ly?). The top­ic was Jane Jacob’s 1961 clas­sic, The Death and Life of Great Amer­i­can Cities. The six of us gath­ered in a Collingswood, N.J., cof­fee shop were all city design geeks and I could bare­ly keep up with the ideas and books that had influ­enced every­one. Here is a very incom­plete list:

Update: And also, from Genevieve’s list:

  • Hitch­hik­er’s Guide to the Galaxy. Dou­glas Adams, for its absur­dist humor around the bureau­cra­cies of planning
  • Green Metrop­o­lis. David Owen,
  • What’s Up With That: Build­ing Big­ger Roads Actu­al­ly Makes Traf­fic Worse,” an arti­cle by Adam Mann in Wired on the phe­nom­e­non of induced demand.
  • Vision Zero Initiative
  • The Pine Bar­rens. John McPhee, the clas­sic which I brought up.
  • The Pow­er Bro­ker. Robert Caro.
  • The Ecol­o­gy of Com­merce. Paul Hawken
  • Orga­niz­ing in the South Bronx. Jim Rooney
  • Re: race: Dal­ton Con­ley’s Being Black, Liv­ing in the Red and When Work Dis­ap­pears by William Julius Wilson.
  • Re: bicy­cles: Urban Bik­ers’ Tricks & Tips. Dave Glowacz

Excuse me for the next six months while I read. 🙂

Unlikely collaborators

September 9, 2015

When Fran­cis real­ized that Theo’s board game based on our home town did­n’t include gas sta­tions, he added them in. Fran­cis also moved the incor­rect­ly locat­ed bicy­cle shop. Theo was briefly mad when he saw these unau­tho­rized changes but when he real­ized the cor­rec­tions were improve­ments he made Fran­cis his offi­cial fact checker.

Autism, anxiety, and bullies

September 2, 2015

A pub­lic ser­vice announce­ment from my wife Julie ear­li­er this evening:

Autis­tic peo­ple feel anx­i­ety just like all of us. How­ev­er they may cope dif­fer­ent­ly. For neu­rotyp­i­cals, if the anx­i­ety is a result of some­one taunt­ing or being some­how rude or abra­sive or annoy­ing, we know to walk away. But in my expe­ri­ence with my spec­trum kids, they don’t under­stand why peo­ple are mean, and they’ll freak out or just keep com­ing back for more. They don’t nec­es­sar­i­ly get that it’s best to leave some peo­ple alone and walk away. It takes many such lessons to “get it” because their minds work dif­fer­ent­ly. They go from the spe­cif­ic to the gen­er­al, not the gen­er­al to the spe­cif­ic, as Tem­ple Grandin points out. They are easy tar­gets for bul­lies. #The­MoreY­ouKnowAboutAutism

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.