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 the maternity ward to get their little butts out here. Nothing profound — just curiosity about the future-them, and lots of frenzied excitement. From womb to world, theirs was about to change, to put it mildly. And our world was about to change at least as much. And 23 months later, another change right between the eyes.
Autism. Severe. The day that the diagnosis slammed us, I knew any potential futures we had imagined for Ben just went out the window. For the family too. It had just morphed into a looming, engulfing black hole. And black holes suck you in, ready or not. And another thing about black holes — nobody knows what’s inside them.
Yup, that was the future. And here we are.
They are thirty!!!
If the 36-year-old Dave, sitting on the floor in Chicago with the newly diagnosed but obviously very autistic Ben, as he spun the wheels on his toy truck, could have glanced into that Tabula Rasa future, I’d have seen big unexpecteds — like Cleveland becoming our home town. And our two boys living in different cities from each other.
Jake remains in Chicago. And guess what he has become? Hints: First, his brother is a special needs guy whose condition was the core of the family’s life. And, his dad’s a damn shrink.
Yep, Jake’s a Social Worker. And he had a busy, and truly eventful 30th birthday, with rarely seen family and old friends and new friends and old bars and new bars and the Old Town Ale House and a beer tasting contest. And he’s not even a drinker. As Borat would say, his birthday was A Great Success!
And so was Ben’s, though it might have — no, definitely — looked different from his twin’s.
Ben’s drive-by birthday bash was the brainchild of Titi, someone who used to work with him and has stayed connected. She knows his preferences and peccadilloes, and suggested a clever plan that would allow Ben to enjoy his birthday and, a biggie, with zero stressors.
Ben loves being driven, and that’s mainly what visits with us are, with plenty of food, natch.
And Social Stories are critical if novel plans are made. This is in addition to the usual schedule he gets at the beginning of every visit, like this one, from the day before his birthday:
Saturday, July 29, 2023
- Eat Five Guy’s for Lunch!
- Drive fast with Mommy and Daddy!
- Go to the apartment! Eat Ice Cream! Eat Blueberries! Eat a Jelly Donut!
- Drive Fast with Daddy!
- Eat two Luna Bakery Cookies!
But on his birthday the next day, the Social Story came first. Typical birthdays have parties, with friends, and goodies to eat, and presents to open, but parties for Ben are stressful, unpredictable events. So, Titi thought of a way for Ben to have a moveable party, plenty of old friends, and goodies, and presents (aka, books), and no stress. This was the Social Story we e-mailed to his house the morning of his birthday:
HAPPY BIRTHDAY BENNY BOY!
YOU ARE 30 YEARS OLD NOW!
Today we will all Celebrate with you!
We will Drive to see your Friends!
Ben will stay in the Car.
Your friends will come out to the car to see you!
They will give you presents and treats!
First we will go see Catie!
Then we will go see Jenny!
Then we will go to Kathi’s house!
We will sing Happy Birthday to Ben!
You will blow out the candles on your Cupcake,
and then eat your Cupcake!
Kathi will give you a Present!
Go to the Apartment for Ice Cream!
Mommy and Daddy will Give You Presents!
Lexi will come to the Apartment to give you a present!
Then we will drive to see more friends!
We will go see Titi!
Then we will go see Cornisha!
Then Daddy will give you a baggie of Little Green Sugar Cookies!
Ben will have another birthday party at the House tomorrow with staff and the guys at the House!
HAPPY BIRTHDAY TO BEN!
~~~
Key words so Ben can enjoy his visit worry-free: Drive; Stay in the Car; Friends; Presents and Treats; Kathi’s house (he loves her, Mom of one of his peers and an old friend who gets him); Cookies.
And even though it seems to cover the same ground, to confirm that no uncertainties nor unpredictabilities will rear their ugly heads, Ben got his usual schedule, too, which is more specific:
Ben’s Schedule
Sunday, July 30, 2023
HAPPY BIRTHDAY BEN!
- Eat Wendy’s for Lunch!
- Go see Catie and then go see Jenny for your Birthday! Ben will stay in the car!
- Drive in the Country with Mommy and Daddy!
- Go to Kathi’s! Sing Happy Birthday! Eat a Cupcake!
- Go to the apartment! Eat Ice Cream!
- Open presents from Mom and Dad!
- See Lexi at the apartment for your Birthday!
- Drive with Daddy!
- Go see Titi and then go see Cornisha for your Birthday! Ben will stay in the car!
- Eat a baggie of Little Green Sugar Cookies!
Most of the fellow celebrants used to work with Ben, some going back to, literally, his first days at Monarch, a dozen years ago, when he was just a wee lad of 18. Actually, he’s 6’3″. He’s never been wee.
So to finish with another mantra, this one my own:
Time flies, whether your having fun or not.
And while a few decades of autism have been the opposite of fun, for us but especially for Ben, life with our boys has brought us more fun, and love, than we could have ever imagined.
For 30 years and counting.
So thank you boys.
And party on!