16. Our Umbrella

November 2, 2021

Welcome to another issue of It’s Like This. If you have a chance, please take a listen to the recorded version by clicking play above - this one includes a snippet of my son’s beautiful voice. A rare treat! Thanks for being here.

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I could hear my son singing from across the house. I recognized the song and couldn’t help but smile.

My twenty-two-year-old first heard this song well before he could speak or sing the words.

I picture him, just two years old, at our “Mommy and Me” Gymboree class, his face glowing and grinning as he scrambles with the other children under a huge brightly colored parachute. We parents form a circle and shake the parachute over the kids to simulate a storm. As the song ends, we raise the parachute up high and drop the sides quickly behind us, scooting under to sit on the edges, creating a bubble of safety and silliness with everyone underneath.

Come under my umbrella
Umbrella, umbrella
Come under my umbrella
It's going to storm.

There’s thunder and lightning
And wind and rain

Come under my umbrella
It's going to storm.

While my son was singing of thunder and lightning, I was in my office preparing for a rainy day of another sort.

That day most of us avoid thinking about, but for which planning is necessary – especially when you’ve got a special needs child. Yeah, I’ve been in that spooky territory of estate planning, re-grouping on all the paperwork we need to have in order – just in case.

Included in all the financial, legal, and healthcare-related documents, I’m tasked with updating a “Letter of Intent.” Essentially, this letter is an instruction manual for my kid. It should include everything his team needs to hold this umbrella over his head, to keep him secure and protected throughout his life.

The logistical parts of this are tedious but straight-forward. Pages and pages of names and phone numbers, member IDs, account numbers; which medications, what services, where to buy beads and earplugs in bulk.

This letter is also supposed to describe our hopes and expectations for our son’s future, where he’ll live and what will occupy his time, along with anything we know about him that someone else should know: his current likes and dislikes; the meals he’s eating (or not); his ways of communicating; and the patterns he expects around the house.

Now, I am notorious for leaving overly detailed instructions if my husband and I get away for even one night, writing down everything his providers might possibly need, as if I’m not also a phone call away.

But when someone reads this Letter of Intent there will be no option for a beyond-the-grave phone call. So, it feels pretty impossible to include everything I’d want his future caregivers to know.

Some things, they’ll just learn over time.

They’ll figure out that he won’t wear long pants or shirts with buttons.

They’ll see that he always keeps a cup of water in the center of his placemat, except if food is present.

They’ll find out that his amped-up, agitated state one moment doesn’t mean he won’t be in a great mood in another hour. And vice versa.

They’ll learn that if there are leftovers in the fridge (especially pizza), he’ll likely be up early the next morning to ask for them, first thing.

But there will be mysteries.

They won’t understand why he answers the question, “What does Cookie Monster say?” with a laughing growl of: “Eat your chicken!”

They won’t recognize the origins of the phrases he says on repeat, like “Give the dog your food!” or “Ernie! Turn the fan off!” or “There she is!” or “But he jumps off.”

They won’t possibly appreciate the true beauty of a nonsensical phrase cobbled together from picture books and food labels, like “Oreo Cookie doesn’t want to come inside and go to beach” (a very rare 11-word statement said very clearly, but only once, despite his mother’s repeated attempts to record him later).

I want our Letter of Intent to help his future providers see our son the way we do.

Not just so that they can better manage his day-to-day needs or be in on the jokes.

I want them to know him.

I want to tell them about the pre-teen who would roll up the passenger side window to stop his mother and aide from talking across him at school pick-up; and the boy who bounced on an exercise ball through the halls of his elementary school.

They’ll hear the few words he speaks with intention; but I wish they could hear his first “guh” (for “go”) at three-and-a-half years old, as we lifted one side of the comforter to roll our giggling kid across the bed and back, over and over.

I want to show them, even as they watch his stress build up, how much worse our son’s rage once was, and how far he’s come to pull himself together.

When a favorite song plays and they see him shuffle his feet in a hesitant dance, I want to remind them of the little guy who would boogie with his reflection in the sliding glass door.

And when my adult son sings of umbrellas and rain, I need them to picture that sweet boy, wide-eyed and laughing, under a parachute.

I hope his future providers can feel a connection and an intimacy with my child, understand his backstory, how he learns, what makes him panic or smile or sing.

I want to leave my son in the comfort of a circle of caregivers that know him enough to not only provide shelter over him but be willing to tuck in beside him under that umbrella, to ride out together whatever storms may come.

How do I communicate the heart of who he is in one Letter of Intent?

This letter is going to be the length of a book…