So, about this life with Casey...

Posted by admin on February 20, 2019

autism special needs

Many of you have noticed that I don’t write about my son Casey very often. Through the years, I’ve been asked over and over when I’m going to write a book about him, about life with autism. I’ve been told, so many times, that folks find my occasional Facebook posts about him inspiring, that they love to hear about his life and what I’m learning from his extraordinary self. Yes, for all who have asked, I have thought about a blog - I’m a writer, for heaven’s sake, and blogging is the end-all-be-all of platform builders in this digital publishing age. He would supply never-ending material, that’s for darn sure, and if there’s one thing I love to do, it is talk/write/gush about any one of my three kids.

So why not?

Quick background, for those of you who haven’t been my friends since elementary school: Casey was born in July of 1994, 17 months after his big brother, Jesse. For a few glorious heartbeats, we got to enjoy the sweet and simple bliss of two happy, healthy, darling little bald guys. Casey was more easy-going than his tricky older brother, easier to engage, more relaxed about his surroundings and his schedule, and FLIRT - oh my gosh, taking him to the grocery store was a trip! As soon as he spotted a little old lady (his favorite victims), those chubby little arms and legs would start flapping, and he would grin that big, gooey, sunny grin of his.

And then, a story that has been told too many times. Vaccination. A high-pitched scream that went on around the clock for days. Diarrhea. Rashes. Lethargy. Withdrawal. Regression. And doctor’s appointments. Many, many of those, culminating in a diagnosis of moderate to severe autism.

So, back to that “why not” write about Casey question...

Until this point in my life, I wasn’t ready. I had to vomit up (and delete, delete, delete) two pages of righteousness to get to the following simple sentences: I’m not opening up this forum because I want to convince anyone of anything. I’m not inviting debate. In terms of approaches to health and various medical modalities, I have read, studied and analyzed, and I have reached a belief system I am comfortable with. I invite you to enjoy and exercise the same privilege. After over twenty years in the arena, I have won the privilege of non-combat.

Besides, that is the LEAST interesting stuff I could share here!

If I didn’t already tend towards the woo-woo, my youngest son would have dragged me there. His Aunt Kristy, who witnessed his first breaths, has always called him “fey” - other-worldly, mysterious, not quite of this Earth. The charm he used to wreck little old ladies with is one of the only traits today’s Casey shares with the before-Casey. I don’t watch videos of that little guy, by the way. Not ever. It hurts too much, seeing the ghost, the might-have-been. This leads me perfectly to the first lesson he taught me.

To love Casey is to be intimate with paradox. I know both the regret of a course not taken, and the joy of a path I never would have been brave enough to follow on my own. I mourn the dreams I held for him - my athlete, my girl-crazy boy of fall, my gorgeous, smooth operator - and at the same time, I am humbled by the experiences and depth of emotion being his mom has brought to my life.  Every day, Casey breaks my heart. And every day, he heals it. 

This lesson began in March of 1996, in the blur of dark days following Casey’s diagnosis. Couldn’t sleep. Couldn’t eat. Couldn’t stop crying. I had offered up every bargain I could think of: Me for him. My life for his. PLEASE. I didn’t know you could hurt so much and keep on breathing. I was stuck in that abyss for days, incapable of doing even one thing beyond changing diapers, putting food in front of my sons, and reading romance novel after romance novel. Escape. I had a hundred phone calls I was supposed to make, and every single one of them was unthinkable. Impossible. Then, one afternoon, I looked up.

Casey was “playing” near my feet, in the middle of the living room floor. “Playing” is in quotes because even then, he had begun to perseverate on strange and inexplicable activities. At that moment, he was holding a wooden puzzle piece, a rabbit, and he was turning it over and over in his baby-dimpled hands. I looked at the tender curve of his cheek, the lush dark shadow of his eyelashes, the sweet vulnerability of his delicate little nape. I looked at the soft light brown ringlets covering the smooth roundness of his skull...and I wondered what had gone wrong under those curls, inside that skull. He glowed like a perfect angel, sitting there, so beautiful and so very, very far away. His withdrawal and regression had wounded me deeply - I felt rejected, hurt. It’s hard not to take autism personally when you are new to it. I missed my baby. And I wanted him back.

I think of that moment as the first touch of Grace I was granted. It was so quiet, I could hear Casey breathing - I will always remember that. My heart had been so tight and hard with grief, and I hadn’t been able to take a deep breath for days. I synched my breathing with Casey’s, and felt my heart relax, felt it flower open. In the space that opened up between us, I could feel our connection, that “click” of completion I have always felt when I’m with any one of my children. I could also feel Casey slipping away. I can’t explain it, but I knew he was considering leaving the planet. I knew. I sat up straighter, and every bit of Nicolai that runs through my veins sat up, too. “Oh no you don’t,” I thought - the first clear thought I had, rising up above me, pulling me out of the black. “Not without me, pal. You’re not going anywhere without me!”

And so it has been, since that moment. Casey and me.

This lesson was the first of many, and they keep right on coming. So if you’re interested in autism beyond the controversy and sugar-coating, beyond the Muppets and the politics, beyond blame and biomedical and behavior modification, well, then, stick around...