Remembering

September 28, 2016April 28, 2019 Guest Submitted Post

I’ve been doing a lot of reading lately. I’m totally hooked on so many blogs out there — especially the ones by other parents of complicated kids. You are my heroes!

As I read, one theme, in particular, stands out. Many parents of autistic children can remember — with incredible detail — when their child was initially diagnosed. It’s definitely a life-changing experience, I know.

Another common thread is the grief that goes along with this initial diagnosis. The sorrow for the hopes and dreams lost. And the fear of a very uncertain future.

And this got me thinking. Does the grief process ever really end?

I too remember the day Big Brother was diagnosed. He was six. We were totally and completely blindsided. Yes, we knew something was different. We even suspected Asperger’s. But sitting in the psychologist’s office, hearing those words officially spoken aloud hit like a ton of bricks.

Over the years we’ve recovered from our initial shock. But that wave was soon replaced by many others. Sometimes it hits me when I least expect it. And when it does, it attacks so many levels. I find myself saddened by his struggles, but mostly I’m disappointed in the world around him. The cruelty and misunderstanding never cease to amaze me.

I clearly remember in first grade when he couldn’t handle the class field trip. When the teacher thought he was just manipulating the situation and made him sit in a room full of loud noises and dancing children. I cried as I came in and found him curled up in a corner, hands over his ears. And as I walked past the bus filled with laughing, relaxed children, I ached.

I found myself grieving for my overwhelmed, anxiety-ridden boy, and for the relaxed, happy childhood that did not exist.

Then there was the time in third grade when he wanted to play football. He was so happy to be on the team with other kids. This quickly came to an end when he couldn’t keep up with the others and didn’t understand the coach’s “be tough kid” attitude. Halfway through the season, we couldn’t get him on the field, and by the end, we just stayed home. This time, mourning came for the sports he would never play.

Or the many times I’ve seen a friend — his best friend one year — off to greener pastures the next as he ran laps around Big Brother in the maturity department. The disappointment could be seen, etched my son’s face, not understanding what he had done wrong. Another sadness came, for all those social connections now broken.

I’d have to say, last year was by far the worst. Many kids, who had excepted him when they were younger, began to shun him because he was weird. The “R” word was used liberally, as were other derogatory terms. For the first time, Big Brother was fully aware how different he was, and as he hurt, I was right there with him. I ended up with a deep, gnawing pain — for the kid who was always on the outside looking in.

This is not to say our experience has always been ones of sadness. I have a beautiful, healthy child. I celebrate the many aspects of his unique nature, which by far outweigh the challenges. And this year especially, he has found a more accepting environment, a place where he belongs.

So as I write I try to hold onto these feelings. To tuck them away and keep them close. Because when all is said and done, they will be my solace when the next challenge rears its ugly head.