For the very first article on this site, I want to set the tone by keeping it real from the start.
My wife Bella and I struggle with autism a lot of times. Shocker huh?
It sucks sometimes!
There, I’ve said it. The phrase “The struggle is real.” doesn’t even begin to describe it sometimes.
Here is the philosophy we live by; you can’t “fix” autism.
You can only help your child, and support them.
You CAN however, fix yourself by changing the way you view things.
I’m a true believer of this, and much of what I’ll be writing about as the site grows is based on that philosophy. It doesn’t change the fact that it’s still hard, and sometimes it just flat out sucks!
I’ll share with you why the struggle is real for ME. That’s right…for ME.
Just because the struggle is real doesn’t mean it’s the same for each person.
What I experience with John is different than what you experience with your child.
And even though Bella and I experience many of the same things with the same child, what bothers her aren’t the same things that bother me.
They say that if you’ve met one person with autism, you’ve met one person with autism. I don’t think that’s fair though, because ALL of us are unique. (and right now, Bella is sitting next to me telling me how “unique” I am. Good grief!)
Not only are we each unique, we all change over time.
As an autism parent I struggle sometimes, and always will to some extent.
The things I struggle with now though, aren’t the same things that I struggled with years ago.
Some of that is because my step son John has changed and matured as he’s grown older, and some of that is because I’VE changed and matured as I’VE grown older!
I can remember a time when a meltdown was the worst thing to ever have to go through. I didn’t know how to deal with it!
I knew John had autism, and I’d read all I could about meltdowns. But they felt so personal.
They were vulgar and mean, and he had a knack for knowing exactly which things to zero in on to get under my skin.
The worst for me was any time he said something derogatory towards Bella, or acted threatening towards her in any way. Look here boy, you can say and do whatever you want to me. You threaten your mom though, and I will take you out!
My my, how things have changed.
Just the other day he was starting into a meltdown, and he was being passive aggressive by telling me how awful his mom is while she was sitting in the same room.
I didn’t get upset or try reasoning with him, I simply agreed. “Yep, your mom is horrible.”
I even had a little fun with it at her expense!
“She should consider herself lucky to have found me. I work with her to make her better, but she never seems to listen.”
I knew better than to engage him in the way that he wanted, or to try reasoning with him. It just doesn’t work when he’s in that state.
I knew the things he was saying weren’t things he truly felt.
What he felt was anger and frustration, because something wasn’t going the way he felt it needed to go, and he simply wasn’t able to process it and communicate it properly.
Not because he hasn’t been taught the right way, not because he’s stupid in any way, but because he has autism!
So no, meltdowns aren’t what I struggle with the most.
Oh, they still aren’t fun or easy. And yes, he is still the king of knowing exactly which buttons to push to bring me to the edge, but it’s not as hard for me to keep it cool now.
He IS growing and maturing so meltdowns are less frequent, less severe, and he is often able to bring himself under control in a shorter period of time.
Of course this has taken tons of work from Bella and I over the years by having conversations with him after each and every meltdown to teach him the correct way to communicate and handle his emotions.
Tons of work for ourselves too, by learning how to best handle a meltdown without elevating it to new heights.
Just to be clear, Bella is a natural in this area, whereas I’m more like the cook you send to the back to do dishes because you’re afraid they’ll burn themselves if you let them near the oven. (One day with enough hard work, I may get promoted to cleaning bathrooms!)
Where I do shine though is in his small obsessions.
I use the phrase “small obsessions” because technically they would be classified as obsessions, but they’re more like singular focuses.
His passion for animals, his love for building camp fires, his interests in super heroes.
He can sit and talk for hours about snakes. Which ones live where, which are the most dangerous, how potent their venom is and how it works, and on and on and on.
I can’t say that I necessarily share the same passions as him, but I understand his need to talk about them ceaselessly.
I help him to feel significant and fulfilled by actually having conversations with him about these things, and not just listening and nodding.
We look up information together, see who can find the best photos and of course talk about them…(over and over and over).
I may be a bit drained at the end of our Man Day, but it’s all good and I don’t feel like I’ve struggled.
What I struggle with the most is almost laughable.
I forget he has autism!
More accurately, I take his improvements for granted.
I study autism, I write about it, I advocate for it, I live it every single day and yet it’s so easy to forget that he’s not a neurotypical child and I can’t always treat him as one.
It’s a fine line really.
We constantly work with him to develop his social skills. We teach him to make good choices, to use “better words”, to be more self sufficient and SO many other things.
He has dramatically improved over the years, but there is never any doubt that he is on the spectrum. Our life is simply our “normal”, and it’s so easy to forget he has autism!
Take for example a new bed spread that Bella and I bought.
John kept wanting to take it off the bed and into his room, or downstairs to wrap up in.
I didn’t like it!
I know it’s just a bed spread, but those things aren’t cheap, and he’s not the tidiest person in the world.
He eats without using napkins and has no problems wiping his hands or mouth off on his clothes or blanket.
He walks around with it dragging on the floor etc… I finally started trying to put a stop to it, and it created a problem.
What the heck?!?!
I just want you to use your own blankets buddy, and not mine!
I grumbled, then I let it go, grumbled some more, and then backed off. After a few weeks of this, it dawned on me that it was a sensory issue.
This was a heavy, fluffy bed spread much like a weighted blanket!
I know about weighted blankets!
It just never occurred to me why he needed OUR blanket, I didn’t think about how it made him feel, and how it was related to autism.
We went out and bought him a weighted blanket and the issue was resolved! Easy peasey!
Of course now I can’t help wonder if that new stain on the bed spread is from him blowing his nose or not. Oh John!
I guess the struggle is real even when it doesn’t appear to be real. Continue to live in faith and not in fear.