One of the most unreasonable, exhausting, and heartbreaking sides of my son’s autism is his battle with anxiety. Sometimes anxiety falls under the ever-broadening umbrella that is Autism Spectrum Disorders, and sometimes you face anxiety as one of many comorbid diagnoses.
In our world, anxiety is the fierce sidekick to autism. It’s the root of things like self-injury, aggression, and property destruction.
It is also the thief of time.
Anxiety is the reason you will not find our family in line for a ride at Disneyland, a photo with Santa, or even a burger and fries. No line, anywhere. Waiting is hard and waiting in unfamiliar environments is when anxiety seizes the opportunity to creep in and serve up an emotional and physical beating until my sweet boy is missing from behind those bright blue eyes.
What I would give to crawl in there too, to fend off this awful intruder for him. To remove all the pain and confusion and just leave behind the unique, beautiful wonder.
We have found some alternatives, like Sensory-Friendly Santa appointments. You learn to adapt. I have accepted that some places in the world are just not for us.
At least not for right now.
But I would be lying if I didn’t say that I sometimes wish we had a perfectly curated family photo at the local pumpkin patch. We went the other day, my two kids and I, and after disrupting all the other families there with my boy’s bloodcurdling screaming (he really has found a new pitch), my attempt to carry him out looked more like a curated kidnapping was underway.
Here’s the thing: a kicking, screaming, fight-or-flight meltdown looks a lot different in a seven-year-old than it does in your typical toddler I-want-a-candy-bar scenario.
When Wilson was five, we both sat in the middle of a busy hospital lobby, sobbing. I could not move him. I had given up until a guardian angel in the form of a nurse offered to help us.
Sometimes we spend hours on meltdown and recovery over something as simple as clothing or food. These are moments, hours, and days that we will never get back.
The thief of time, you see.
These kinds of days can take it out of you in every way imaginable. You boil down the goals to giving him space and keeping him safe. Sometimes you just want the day to end so that tomorrow can be new, and hopefully different. And just maybe the world won’t be too much for him then.
Here’s the part of our picture I want to paint very clearly: my boy is happy. He is kind, gentle, finds joy in the simplest things and then radiates that happiness throughout the room. He is also fearless, brave and works hard every single day on regulation and communication.
A little contradictory? I know, I am confused too.
We cannot control when anxiety will show up, how long it will stay and what it will leave in its wake.
We try, but this is just one of the many unpredictable parts of this autism journey.
What we can do is continue practicing coping and regulation skills, even if sometimes that means getting out of our comfort zone, so that one day, you will see us waiting patiently in a line somewhere.
We can also soak up the happy moments and continue to celebrate all the small victories, because really, they are all big ones to us.
Wow, wow, wow…this post speaks to our situation too. Sadly, we can relate all too well. It is heart wrenching to watch our boy in a proud moment of independence, where we are beaming at him, to a moment later caught in a fit of anxiety when the simplest of things does not ‘fit perfectly’ into the routine. This can happen at any time of day, at a moment’s notice and a fun activity like trick o’ treating turns into a nightmare for our family.
Thank you for sharing so openly to give the rest of us, out here fighting the same battle, someone to relate with.
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Oh mama, we are so there with you. It’s so frustrating when something that was supposed to be fun just causes stress and breakdown. It’s just heartbreaking…💔 thank you so much for reaching out, it means so much to know others who can relate. Hang in there!! 💙
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