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

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.

Camp Acagisca

June 20, 2015

A two-night scouts camp­ing trip with two of my kids to the coun­ty facil­i­ties at Camp Acagis­ca nears Mays Land­ing turned into a one night with one kid affair (my 11yo got way too mouthy when it came time to decide who was going to share a tent with dad and went home imme­di­ate­ly; the 9yo end­ed up in a melt­down mid morn­ing on the sec­ond day.)

 

Rain camp­ing

A video post­ed by Mar­tin Kel­ley (@martin_kelley) on

 

And while I assumed the name was some sort of Lenape con­struc­tion, it’s appar­ent­ly an amal­gam of Atlantic City Area Girl Scout Camp.

Hammonton Food Trucks

June 12, 2015

From the first Ham­mon­ton Food Truck Fes­ti­val. Cool stuff but the lines are way too long for a sin­gle par­ent with four antsy kids.

One of our friends said the line waits were up to 1.5 hrs. I could just about have jumped on the express­way to Philly, got­ten some Fed­er­al Donuts, and made it back in that time. I like that Ham­mon­ton has made then edges of a hip­ster map but this is a bit sil­ly. We end­ed up get­ting frozen treats at the Wawa around the corner.

Nostalgia comes early

November 25, 2013

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 fiancee 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:
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Bits and pieces, remembering blogging

May 13, 2013

I real­ly should blog here more. I real­ly should. I spend a lot of my time these days shar­ing oth­er peo­ple’s ideas. Most recent­ly, on Friends Jour­nal you can see my inter­view with Jon Watts (co-conducted with Megan Kietzman-Nicklin). The three of us talked on and on for quite some time; it was only an inflex­i­ble train sched­ule that end­ed my participation.

The favorite part of talk­ing with Jon is his enthu­si­asm and his tal­ent for keep­ing his sights set on the long pic­ture (my favorite ques­tion was ask­ing why he start­ed with a Quak­er fig­ure so obscure even I had to look him up). It’s easy to get caught up in the bus­tle of dead­lines and to-do lists and to start to for­get why we’re doing this work as pro­fes­sion­al Quak­ers. There is a real­i­ty behind the word counts. As Friends, we are shar­ing the good news of 350+ years of spir­i­tu­al adven­tur­ing: obser­va­tions, strug­gles, and imperfect-but-genuine attempts to fol­low Inward Light of the Gospels.


My nine year old son Theo is blog­ging as a class assign­ment. I think they’ve been sup­posed to be writ­ing there for awhile but he’s real­ly only got­ten the bug in the last few weeks. It’s a full-on Word­Press site, but with cer­tain restric­tions (most notably, posts only become pub­lic after the class­room teacher has had a chance to review and vet them). It’s cer­tain iron­ic to see one of my kids blog­ging more than me!


Enough blog­ging for today. Time to put the rest of the awake kids to bed. I’m going to try to have more reg­u­lar small posts so as to get back into the blog­ging habit. In the mean­time, I’m always active on my Tum­blr site (which shows up as the side­bar to the right). It’s the buck­et for my inter­net cura­tions – videos and links I find inter­est­ing, and my own pic­tures and miscellanea.

Using apps to help kids with autism

February 12, 2012

Sounds like a ther­a­py that can get pret­ty expen­sive pret­ty quick­ly, and the arti­cle shares con­cerns about just how help­ful all of these might be. Still, I have to admit it’s pret­ty amaz­ing to watch my 6yo play­ing the read­ing games on reas​dingeg​gs​.com web­site and he’s pret­ty instinc­tive with the touch­screen of my smart phone.

Embed­ded Link

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Using apps to help treat autism | Macworld
Some par­ents of autis­tic chil­dren see ben­e­fits from the use of apps and tech­nol­o­gy; how­ev­er, experts raise concerns. 

Theo and Francis play lifeguard

August 6, 2008
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Theo and Fran­cis play lifeguard

Orig­i­nal­ly uploaded by martin_kelley

More pics over on the Flickr account. The after­noon rit­u­al is to run off to an out­door adven­ture when Fran­cis wakes up from his nap. Favorite spot: the lake park. Here are the boys on top of the life­guard stand.