stuckfains - Tumblr blog

[stuckfains]

Benny Book Bacchanalia

Most of the ripped up Christmas/Hanukah wrapping paper had been picked up and tossed out, while the presents remained on the table for frequent perusing during the brief apartment stop-over between nice long drives. The nice long drives, aka “drive fast,” are a Christmas tradition. And also a three-times-a-week-every-single-visit-ever tradition. And yes. He loves books. Though he is not one to…

[stuckfains]

Happy Birthd... oops, we mean Happy Hanukah!

Ben loves lighting the Menorah on Hanukah. What he loves best about it is blowing out the candles — no Happy Birthday song necessary. Oh, and to my fellow Goyim who might not be hip to the trip, this is NOT how the Menorah is supposed to be done. You don’t blow out the candles. They’re supposed to burn down and out on their own. But we figure God gets it and will let him off the hook. Blow on,…

[stuckfains]

A Benny New Year to All!

[stuckfains]

Happy Halloweenee!

Coyboy Ben! Yeeeee Haaaahhhhh! And thank you for the pic, Jazzane!

[stuckfains]

The Doughnut Solution

Ben loves powdered sugar doughnuts. He also loves cinnamon donuts. But two doughnuts is too much. (He would vigorously disagree, even after vigorously eating his Five Guys cheese dog and fries, and his ice cream, and his pear, and his banana.) So after much deliberation, here is our brilliant solution to the doughnut problem. Brilliant Doughnut But the only problem with our brilliant doughnut…

[stuckfains]

Ben gives Jake a Compliment

Ben and Karen were in the back seat for a Ben-drive when Ben’s fraternal twin, Jake, sent a picture, displaying both his cast from carpal tunnel surgery (he’s fine), and a new bushy beard, along with his Grandma Bubbe. This particular photo was chock full of favorite things. First, he spotted Baskin Robbins and Ben and Jerry, old and beloved friends, just add spoons. Of course, there was…

[stuckfains]

Ben and Jake are 30!

Ben (on left) and Jake, way before they were 30 John Lennon said it best. It’s become a sort of internal mantra for me. “Life is what happens to you while you’re busy making other plans.” Our boys turned 30 this week, and never was an event more perfectly mantra-made. I actually wrote them — twins — a short letter, which of course I can’t find at the moment, when we were waiting for them in…

[stuckfains]

Missing Mike Royko, my Autism-Aware Dad, for 25 Years

Missing Mike Royko, my Autism-Aware Dad, for 25 Years

As the 25th anniversary of Dad’s death approaches — April 29 — and as Autism Awareness Month, 2022, winds down, it occurrs to me that my father (Mike Royko), more than 25 years ago, was very aware of autism. I had gone to his office at the Trib to tell him about Ben. When I finished, he said, “You have a child with special needs.” It was the first time, and to this day, maybe the only time, I…

[stuckfains]

Extremely Autism Aware for 27 Years and Counting

Extremely Autism Aware for 27 Years and Counting

Disclaimer — This is about Severe Autism, not higher-functioning autism or Asperger’s Syndrome. Individuals with those types of autism often do their own writing about their worlds, which are usually extremely different — severely different — from that of Severe Autism. ~~~ After twenty seven years of severe autism in our family, we still don’t know exactly what it is, how it’s caused, or how…

[stuckfains]

A Trio for Ben's Driving Trio

A Trio for Ben’s Driving Trio

It takes until the sixth paragraph, and again at the end, but yes, I promise, this does involve Big Ben. And I did put a cute, if unrelated, pic at the end. But if you aren’t a music fan, it might be rough going. But come on, who isn’t a music fan? Ben sure is. One of the things I despise about my own mortality is knowing that, as I exhale my last gasp of Nitrogen, Oxygen, Carbon Dioxide, and…

[stuckfains]

Food Preparation, Ben Style

Food Preparation, Ben Style

Iron Chef Ben Given a handful of the chewiest of chewy candies, also known as Starburst, Ben, very purposefully, gets them ready for his mouth. He doesn’t simply unwrap and eat them one at a time, like (I assume) most of us do. In a few ways (very few), Ben is a master of (slightly) delayed gratification. First, he unwraps each one. Next, they are stacked — one color at a time. Once these…

[stuckfains]

Bubbe's Here!

Bubbe’s Here!

Ben talks about his grandmother, aka Bubbe, all the time, via his “scripting.” He recites (scripts) the names of people that are, or have been, important to him, and Bubbe is at the top of his list, even though he rarely sees her these days. But frequency of contact doesn’t mean anything to Ben. Once you’re in Ben’s mental Rolodex of favorite people, you’re in. Forever. Like, “Anne is coming,”…

[stuckfains]

Reverie

Ben gazes out of the back-seat car window on a rainy drive. Pic by Karen

[stuckfains]

Ben's Jam

Ben’s Jam

Ben was enlisted for volunteer work a few years ago by a great organization called MedWish, which repurposes otherwise-discarded medical supplies and ships them to regions throughout the world that need them. Ben, I believe, was a sorter, a task he enjoys and is good at. In fact, he’s such a monster sorter, he won an award! The Most Improved award, to be exact. At the annual MedWish banquet,…

[stuckfains]

Severe Autism and Ben's Brotherly Love

Severe Autism and Ben’s Brotherly Love

It ain’t Jake’s fault, nor Ben’s, but a life with severe autism in the family has meant, instead of having one of those “special” twin-relationships, they never got to have much of a sibling relationship at all. As they grew, their trajectories split, ever wider and deeper. Their activities, with most of Ben’s time outside the house engaged in various types of therapies, had little overlap. Their…

[stuckfains]

Love, Autism, and Ben’s Tremendous Gift

Love, Autism, and Ben’s Tremendous Gift

Today, Ben gave me one of the greatest gifts I have ever received. From the earliest days of autism, an alleged “hallmark” was the severely autistic person’s lack of emotions that we consider universal, and central to our very humanity. Thankfully, those days are long past, but for many, the impression or belief remains that autism means a constricted, reduced, or absent capacity for…

[stuckfains]

"Square"

“Square”

Severe autism comes with an endless supply of heartbreaks, big and tiny. And many involve difficulties communicating wants and needs. During a recent visit, Ben went into our bedroom and yanked the comforter from our bed and left it on the floor — the type of thing that happens all the time with the big guy. One of Ben’s favorite recreational activities is making messes; He would be an Olympic…