Unlikely collaborators

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

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

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 

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

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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, 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

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

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.