This week’s anxious newsletter comes from my wife, Kate, from an essay that she posted on Facebook yesterday.
While Andy and I typically don’t write or post about the most challenging parts of
parenting a child (now young adult) with Smith-Lemli-Opitz syndrome and profound autism, some days are particularly difficult. We believe it’s important to be open about the realities of life for families like ours.
These days, autism is often represented in the media as if it were a neurodivergent superpower. While TV characters on the spectrum can perform surgery or practice law, for example, the profound end of the spectrum is rarely represented or discussed. Families like ours recognize that profoundly affected individuals desperately need services such as appropriate classrooms, therapies, day programs, and housing, all of which are significantly underfunded.
And so we are on a mission to spread awareness about the challenges and realities that come with profound autism, and about Smith-Lemli-Opitz syndrome, which caused Jukie’s autism.
Sometimes I wonder if Andy is so good at caring for our boy that he almost makes it look easy. He and Jukie walk many miles a day together, every day. Typically, they cover at least seven or eight miles of greenbelt. On some weekend days, they will walk 15 miles or more. People often tell me that they have spotted Jukie and Andy walking in far west or north Davis, miles from our South Davis home. Jukie enjoys these daily outings and knows the greenbelts of Davis and the arboretum paths better than most Davisites. Andy often lets Jukie choose the direction and length of their walks, as well as the restaurant where they inevitably end up for a well-earned dinner.
As Jukie is nonverbal, we rely mostly on sign language (and a fair amount of mind reading) for Jukie to communicate his wishes. This approach lacks specificity and nuance. Imagine having to rely on your parents and everyone else in your life to understand your complex thoughts, desires and feelings by intuiting and interpreting the best they can. Sometimes I think we do pretty well knowing what’s in Jukie’s mind. And on days like today, I realize that we sometimes have no idea what he’s thinking.
Today Jukie went missing and was lost in the UC Davis Arboretum for what felt like forever. We had last seen him at the shovels sculpture at the Davis Commons entrance. By the time the campus police finally located him, he had made it nearly all the way to the back of the arboretum, over a mile and a half. (He is just fine, by the way.) While he usually stays near us, constantly checking over his shoulder that we are with him, today he made a break for it and took off on a solo adventure.
I wish I could thank everyone in the UC Davis Arboretum this morning, for nearly every person on the path was looking for him. A kind arboretum employee had me ride with him on his little green vehicle, telling me to hold on tight; I had no idea those utility vehicles could go that fast as we sped along the path, stopping to speak with everyone we encountered. Folks were so concerned and caring, and I am so grateful for their efforts. Helping with the search, the UC Davis police spotted him multiple times on various cameras near the Mondavi Center and later caught up with him near the Putah Creek Lodge.
We and Jukie experienced this event in radically different ways. When we reached Jukie with hugs and tears, he seemed entirely calm and unafraid. HE knew where he was and seemed to be filled with satisfaction. On the other hand, of all the stunts Jukie has pulled, we found this one the most terrifying.
Today we share thanks with the arboretum volunteers, the UC Davis police officers, and the police detective who dropped everything to look for our much-loved red-headed wanderer. We feel fortunate to live in such a supportive community and are grateful to everyone in town who helps to look out for vulnerable people like our Jukie.
If you are curious about Smith-Lemli-Opitz syndrome, or would like to support the non-profit organization that funds medical research into the syndrome, please visit https://www.smithlemliopitz.org. You might even find images therein of Jukie and the rest of his family (back when Jukie’s younger brother was closer to 5’1” than his current 6’1” height).
Please plan to partake in the Pub Quiz festivities this pleasant and not overheated evening at Sudwerk in Davis (the heat returns next week). Bring your team to the beautiful outdoor patio where the misters are misting and where we have room for almost everyone. The jollity will be unfiltered. As Ralph Waldo Emerson allegedly said, “It is one of the blessings of old friends that you can afford to be stupid with them.” I encourage you to come early to snag a table. We filled the restaurant and patio last week, and I expect that we will continue to do so throughout September and beyond. Also, tonight I plan to move the quiz along quickly — the entire quiz is only 875 words long! Questions 16-20, about films, are rather short.
In addition to topics raised above, tonight’s pub quiz will feature questions on U.S. states, colors that are in and out of the rainbow, fears, yellow hues, important numbers, adoption results, South America, desserts, the Minnesota Star Tribune, bird-brained songs, market caps, pickles, wives, sporting statistics, Arizona voters, apologies, vaporous vapors, the Middle East, locomotives, teenage restrictions, biological sons, trilogies, American presidents, judges, Queens, taxis, glorious battles, flip-flopping, anecdotal evidence, popular dog breeds, rock bands, places that start with A, cringe dad jokes, current events, books and authors, and Shakespeare. Sometimes a question is substituted at the last minute because of the day’s news, such as that recent Fed rate cut.
Thanks to all the new players joining us at the live quizzes and to all the patrons who have been enjoying fresh Pub Quiz content. Thanks especially to new subscriber Sophie! Every week I check the Patreon to see if there is someone new to thank, such as Janet, Carly, and Joey. I also thank The Original Vincibles, Summer Brains, The Outside Agitators, John Poirier’s team Quizimodo, Gena Harper, the scintillating Mavens who carefully take note of casual adjectives and precise pronunciations, and others who support the Pub Quiz on Patreon(where I am also sometimes sharing drafts of poems). I would love to add your name or that of your team to the list of supporters. I appreciate your backing this pub quiz project of mine!
Best,
Dr. Andy
Here are three questions from last week’s quiz:
- Books and Authors. In her new memoir Lovely One, a Supreme Court Justice tells the story behind her first name and credits the mentors who lifted her up. Name the Justice.
- Cinematic Stories Set in Philadelphia. Jimmy Stewart won his only Oscar as Best Actor for a film for which he had third billing behind Cary Grant and Katherine Hepburn. Name this 1940 romantic comedy that earned 100% on Rotten Tomatoes.
- Countries of the World. Which country is home to the world’s tallest building, the Burj Khalifa?
P.S. Tomorrow is Poetry Night in Davis, and we are featuring a poet visiting from Florida! Check out https://poetryindavis.com/archive/2024/09/an-evening-with-florida-poet-tana-jean-welch-and-local-favorite-tim-kahl/ to find out more.