learning to navigate the world, j-bear style

Autism A-what?

It’s Autism Awareness/Acceptance Month. I feel I should have written about this sooner but life gets away from me.

Other families contending with autism have already noted this everywhere: Every day of our lives is autism awareness and acceptance day. It simply has to be. It’s not like our loved one wakes up some random Wednesday and says “eh, going to put the autism in the closet today!” and just takes a time out from it. It is the ghost in the corners of our homes, always there, always lurking, always eluding clear and consistent explainations and answers.

It just is what it is. And we cope. 

And to think, I am a freshman at the University of Life with Autism. I just started this journey alongside my son. We have a lot of years of study and learning before us and yet, already I feel overwhelmed a lot of days. 

I am learning that might never entirely go away. I am learning I need to find peace and grace with that.

After intense illness last week, my son is not wholly well again still. He vomitted twice yesterday. I cannot just ask him “okay dude, what’s hurting? what’s making you feel sick?” or any such question. I have to ride things out until a symptom or group of symptoms presents in such a manner that the symptoms cannot be managed by common sense home care. I have to play elaborate guessing games and do a lot of hoping and praying. 

It sucks.

I cannot have a conversation with my child. I do not have any guarantees beyond desperate hopes that I ever will. I cannot expect him to interact with the world at large the same way I do or the same way his neurotypical peers do. 

It’s okay though. It’s going to be okay, even when I spend a night in tears of frustration and anger because I cannot sleep due to my son tugging at my ear, pushing at my back or rubbing at my arm so very much that there’s no peace for either of us. 

He is, after all, a person with autism. A person. A sweet, wonderful, charming person. An awesome person. 

We’ll get through this, despite autism and despite my random ramblings. It will be hard but it will be okay. 

3 Comments

  1. autismeducationblog

    Hang in there! My little brother, Arthur, has autism, and while it’s tough at times, it’s a true blessing. People with disabilities are our angels, they help us realize that all those little problems and worries are nothing and that we have to make the best out of everything, because it really can’t be as bad as we think. And, I totally agree, it seems terrible to lack communication, but little by little, your son will start to catch on to words. The way my mom and I taught Arthur to talk was taking a toy microphone and saying words into it. He then was very eager to hear his voice through the mic and would slowly begin to repeat the word. This took a lot of time and patience, but he now can form very basic sentences. By the way, as time goes by, you’ll learn that patience is the key to everything… But that is honestly the hardest thing in all of this. Good luck with everything! And be proud of your little someone with autism! (And, if you’re looking for some good games and activities for autistic children, check out my blog… Arthur really takes interest in them, and that’s really hard for him to do.)

    • nicole

      Your blog looks like SO MUCH FUN! Thank you for commenting – I can’t wait to try some of those ideas with my guy!

      Patience is key, and he’s taught me oh so much about it already. I have an odd background that made the initial blow of autism on my life a little easier to take I feel but it doesn’t mitigate the long term strain on patience, etc. It’s the amazing things they show us that get us through though. The lessons in compassion, how to see the world in such a new and different way, how to just stop sometimes and exist in the here and now… If the stress and frustration are the cost of doing business that comes with having those good things, it’s worth it. Even when it feels like it’s not.

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