Nancy’s Secret Garden

When we came here in fif­teen or so years ago, Nan­cy Forrester’s Secret Gar­den was a mag­i­cal oasis tucked in the mid­dle of a block in Key West, a small for­est said to be the last unde­vel­oped acre in the city’s Old Town neigh­bor­hood. Full of wind­ing paths and trees it was the rarest of spaces: loved, care­ful­ly tend­ed, and shared with the pub­lic as a gift of beau­ty. But even then it felt besieged. In 2012 tax­es and expens­es became too much and Nan­cy sold off parcels to devel­op­ers. From an arti­cle in Key News:

The tucked-away entrance to Nan­cy Forrester’s Secret Gar­den off Free School Lane in the 500 block of Simon­ton Street will be closed to the pub­lic after today, as finances and prop­er­ty tax­es have forced For­rester to sell the land parcels that have housed an artist’s cot­tage and gallery, par­rots, orchids, rare palms, mean­der­ing path­ways and a med­i­ta­tive gar­den for more than four decades.

These days the gar­den has been reduced to a small back­yard on Eliz­a­beth Street which Nan­cy uses as a res­cue par­rot refuge. In the morn­ings she gives edu­ca­tion­al lec­tures on the birds, full of facts about their bril­liant behav­ior, the destruc­tion of their native habi­tats, and gen­tle lec­tures about how we can all pro­tect native par­rot habi­tats by liv­ing more light­ly on the land (hint: no red palm oil or beef). From behind the fence came the sounds of a swim­ming pool being installed in the cut­down mid­dle of the for­mer gar­den. Nan­cy has life ten­an­cy on the ill-repaired house where she lives with the par­rots. 

I don’t know the details of the real estate trans­ac­tions or Forrester’s finances but I find it incred­i­ble that Key West couldn’t ral­ly around one of its liv­ing trea­sures. I’m glad that Nan­cy remains along with her par­rots and I’m grate­ful my kids got a chance to meet her. 

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.

Nostalgia comes early

One of the most famous scenes in the AMC show Mad Men comes near the end of sea­son one. Kodak has asked the adver­tis­ing firm to cre­ate a cam­paign around a new slide pro­jec­tor that has a cir­cu­lar tray. Don Drap­er presents the Carousel and gives a nostalgia-steeped pre­sen­ta­tion that use his per­son­al pho­tographs to move both the Kodak execs and the view­ers at home, who know that these semi-focused pic­tures will soon be all that left of his dis­in­te­grat­ing fam­i­ly.

No falling apart fam­i­ly for me, but I find myself already feel­ing nos­tal­gic for a fam­i­ly vaca­tion to Dis­ney World that doesn’t start for anoth­er six days. I’ve recent­ly been look­ing through our Flickr archive of past trips (four for me) and real­ize that they are our Carousel. The start with my fiancée tak­ing a cyn­i­cal me on my first trip. Lat­er vis­its bring kids to the pho­to­graph­ic line­up: newly-found legs to run, the joys of messy ice cream, the scare of not-very-scary rides and the big eyes of parades all run through the sets.

In less than a week we’ll start a new set. There will be two new chil­dren in this one. “The babies” are both walk­ing and tod­dling and are at their peak of baby pho­to­genic cute­ness. The old­er two are real kids now and the eldest is start­ing to show ear­ly glimpses of teenage-hood: eye-rolling, exha­la­tion of air (“uh!”) to show dis­ap­proval of incon­ve­nient parental instruc­tions.

Icon­ic fam­i­ly pic­tures will hap­pen. Since our last vis­it five years ago, my wife’s lost her father to can­cer and my mother’s been slip­ping into the for­get­ful­ness of Alzheimer’s. As the wheel of life turns it some­how becomes more pos­si­ble to see our­selves as part of the turn­ing Carousel. Some decades from now I can imag­ine myself going through these pic­tures sur­round­ed by indulging chil­dren and antsy grand­chil­dren, exclaim­ing “look how young every­one looks!”

Theo and Francis, Dec 2008
Theo (then 5) and Fran­cis (3) zonked out after a long day in 2008. Hard to believe they were ever this cud­dly.

 

Update post-trip:

There are 104 pic­tures from this trip in our pub­lic Flickr set, with one of our four kids hold­ing hands as they walk to the pool a stand­out icon­ic shot of their child­hood togeth­er:
11208956395_863d0ebfb0_k