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
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.
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.)
Camp at dusk
A visitor stops hopping for a moment
Francis stays up to read Curious George stories by flashlight
Cooking eggs in a ziploc bag
Breakfast time
The group starts off on a hike down to Great Egg Harbor River
Cool growth on downed trees
A broken down out building from when this was a Girl Scouts camp. thr 2012 Mays Landing derecho came right through here and closed the camp for a long while.
River side
I photographed this mostly to have the emergency number handy if needed.
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.
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 (then 5) and Francis (3) zonked out after a long day in 2008. Hard to believe they were ever this cuddly.
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.
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 reasdingeggs.com website and he’s pretty instinctive with the touchscreen of my smart phone.
Embedded Link
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.
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.