Grieving Normal

There they are, in some gathering, “My kid just got a full right schoarship to the prestigious University of their choice and are double-majoring in radiology and some sort of medical program. When they aren’t studying and pulling down high grades, they are leaders in their Greek house, and she’s a cheerleader or he’s the quarterback and they have a volunteer job with the poor and they have perfect teeth and they are already getting job offers from last summer’s internship in New York City.”

I get it, your kid is P.E.R.F.E.C.T.

They are going places.

They aced high school and were the #1 kindergartener.

Whee! Huzzah! Howdy-do-do-doody!

I’m happy for you.

Or: “Hurrah! My kid just got out of the Naval Academy and is already being assigned to a fantastic command post and they have the perfect wife and beautiful kids, and he’s already got two degrees in law and this commission is great, he’s heading for the FBI academy after a few years in JAG and he’s tall and chiseled and has a square head, can run marathons, and will grey beautifully at the temples when the time comes and his kids are not only beautiful, but they’re in the A+ program.”

Good for you. You hit the offspring jackpot.

In fact their perfect daughter will meet somebody’s perfect son and they’ll have perfect kids and everybody’s soooooooooooo haaaaaaaaapyyyy! Oh, by the way, he’s got a job in England lined up, and the family gets to go too and the kids get to go to a prestigious British school with fancy ties and all that good stuff.

Fuckin’ rock on for you, baby.

Go ahead, knock yourself out. Trumpet your luck and happiness at having won the offspring lottery from the rooftops – it’s your turn to shine.

Granted, none of us knows what goes on behind closed doors, but for those of us who tried their best and their kid turns out to have a disability and can’t even hold a job or stay unsupervised in higher education, we’d just like to say, “Bully for you. Huzzah. Wheeee, pass the confetti. Excuse me while I hide in the ladies room because my pasted-on congratulatory smile just peeled off in the wind of reality mourning the future I anticipated for my child when they were a newborn, but pretty had much had to scale down year by year in the face of reality no matter how many tutors, special classes, books read, DIY enrichment and therapists  we hired.

Not to mention struggling to hide my grief and disappointment in front of my child so that I didn’t make things worse and failing.

You know what really hurts? My kid is as smart as yours. Perhaps even smarter, but because of incompatible wiring, while yours danced through the minefield of High School and kept most of their toes before trot-trotting into their early 20s, mine… so far… hasn’t.

Yours is going to England or to New York! Mine can barely get or keep a minimum wage job because they couldn’t even handle trade school and for all those, “Oh, but AUTISM is a GIFT!” rah-rah folks out there, STFU!!!

It’s not a gift. Or if it is, somebody forgot and threw away the receipt.

I don’t know what’s crueler, the “normal looking” kid who at the age of 17 that’s non-verbal and bangs his head on the floor and can’t read, or the one who also looks normal, is astonishingly creative, can control themself with a bit of accommodation, but will probably never hold a real job for the same reasons even if they had a brilliant university career.

The looks, the, “But they’re so intelligent. Why aren’t they employed or why are they underemployed?” crap.

The knowing that you will never be able to relax, because the second you think, “This time it’s working. I can stop worrying. This will work out and I can relax on their behalf.” You and your child get it right between the eyes because whatever it was, flew up out of the grass like a rake,  leaving you laying on the front lawn seeing stars and trying to figure out what to do next.

The kid with Downs probably has it a bit easier. People look at that kid and say, “They can dress themselves and eat with a spoon. Well, that’s as good as it gets. Here’s a sheltered workshop.” and don’t silently blame the parent for babying them. Though what with the ones that are being touted as artists, models, fashion designers, cheerleaders and occasionally holders of Bachelor’s degrees – even that slack may be endangered. You get sympathy, not, “Obviously, they didn’t try hard enough.”

Autism is NOT a gift. It’s a speed bump. As a parent, you work around and over  it and hope you don’t  have to have an expensive front-end alignment when your budget is stretched thin because you didn’t see it in time and reality struck you right between the headlights.

So, enjoy your kid and their perfection. Knock yourself out, but keep in mind that not everybody is in the same boat as you. Trumpet their accomplishments from the rooftop, you’ve earned the right, but remember, a lot of us out here are quietly mourning normal and wondering what will happen to our children after we die when there’s nobody left to be a safety net.

Tags: autism, education, family, grief, kids, mourning normal, parenting, raising autistic kids, self-pity, sour grapes, spectrum, teachers