Mothers Day 2016 L‑O-V‑E

May 9, 2016

DIY Mother's Day present kid handprint.

Last year, the kids and I made a framed hand­print collage-like present for Julie and Moth­ers Day (right). This year I fol­lowed it up with a folksy pho­to of each of the kids hold­ing up hand-drawn let­ters spelling out “LOVE.” This was inspired by this 2009 post on a blog called The Inad­ver­tent Farmer.

The first step was get­ting pic­tures of each kid with a let­ter. It was­n’t too bad as I just had to take enough to get each one look­ing cute.

Here are the four pictures that went into this year's frame. As you can see, it is very basic, just paper and marker. Writing the letters freeform gives it a folksy, personalized charm.

A trick­i­er task was find­ing a frame to dis­play four pic­tures. It took the third store before I lucked out. Because of the tim­ing, I had actu­al­ly print­ed the pic­tures before I had the frame and so had fin­gers crossed that the size would work.

Mothers Day T-minus-one: Three of the kids helped me frame the pictures the night before.

Framed Mothers Day presents two years running!

Once made, the absolute hard­est was get­ting a group shot of the kids with Julie hold­ing it!

Proud Mama with her Mothers Day present from the kids.

Unlikely collaborators

September 9, 2015

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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.