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
Video: Quaker Myths Busted. A 2015 graduate of George School in Pennsylvania drew the artwork for this animated intro to Quakers.
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.
Quaker House interview with Lynn and Steve Newsom. My author video chat. See the Friends Journal post for more, including a transcript.
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.
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.
An ensemble cast of Friends talk about the inward Light, the new video from Quakerspeak
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.
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.