Ever have one of those days where you feel like the guy in the desert wearing the wet suit and you have no idea how you got there?
Yeah, my day was kind of like that.
So, I’m trying to maintain the writer end of life in this blog but some days the rest of life just comes crashing through the walls.
I have a son who is twenty years old and autistic … but brilliant and failing out of college. I have spent countless hours in my life with him having no clue what to do to help him. Somehow, I guess, I thought when he was an adult it would get easier. But it hasn’t. It’s even more complicated now than when he was little and non verbal. At least then I could sit in the floor and hold him or watch “Mulan” for the millionth time.
As a parent of a child with autism, I learned long ago that life would never be normal. I gave up ever hoping that it would be. I learned to just embrace what came when it came and hope none of it was so big that it would completely overwhelm us and we wouldn’t be able to stand up again.
I’ve been knocked down many times along the way.
Autism still wasn’t a “thing” when my son was diagnosed. Research was scarce, doctors even scarcer. Most of the world still blamed the parents instead of realizing that it was indeed a genetic mutation that altered the functioning of the brain.
Our diagnoses shut down our world. Friends didn’t know how to react so they quit coming around. Schools couldn’t cope with him, so we homeschooled. Doctors had no answers, so we quit asking. We had no help. We just had us.
And now, when the world seems to be more educated on the subject, when he should have an easier time of it, he’s trying to break into the world of academia at the university level where knowledge of autism seems to be assigned a spot on the far back shelf on the fifth floor of the library. No one with autism is supposed to be smart enough to complete college level classes. Why give them support?
I’ve seen him fail at trying to do things so many times in his life, you would think it would get easier. But it hasn’t. It’s no different now than it was watching him try to fit in at Boy Scouts or at church. It hurts no less now than it did when he couldn’t ride a bike or catch a ball.
In time he learned. He took the tiniest of steps forward and then ran backwards for yards, retreating into a world we couldn’t touch or hold or help him in. Every step forward meant retreat.
As a parent you regret hoping they will make progress because of all the pain that follows.
That’s not how it’s supposed to be. That’s not what being a parent is supposed to be like. Parents are supposed to get to dream big things for their kids and cheer them on, not fear doing so because of the consequences. Just another hurdle to overcome.
But that’s what parenting autism is all about. Every day is a hurdle to overcome. At the end of the day, another prayer of thankfulness that you made it through.
I’ve been asked, “Don’t you ever just want to quit?”
I don’t want to quit. I love my son no matter what. He is who he is and I wouldn’t have him any other way.
What I want to quit is the ignorance about the disorder, the hatred, the ridicule, the looks from other parents, the lack of compassion we’ve met along the way, the sheer struggle to find acceptance. I’m weary of fighting, of being hurt, of my son being hurt.
But then that can be said of any form of prejudice.
Tomorrow’s a new day. And we’ll get up again and do it all over. Maybe tomorrow that step forward won’t bring so much pain … maybe …