Light slipped through our green black-out curtains that morning, like it does every morning. I sighed, hmmm’d and groaned at the sound of my alarm … like I do almost every … okay, every morning. A flip of a light switch and faint “good mornings” didn’t wake our sleepy kids. Gentle nudges transformed into hand clapping and my morning pick-me-up phrase “C’mon ya’ll get up, it’s to be what?!”
“A good day,” my oldest yawned, desperately trying to remove the “sleepy sand” from his eyes. “It’s going to be a great day,” I replied – just like I do every morning.
It was an ordinary morning for us, the morning of April 2nd, World Autism Awareness Day. The only exception that day was the fact that on that day we, as a family, would all wear blue and/or puzzle pieces to celebrate and advocate for our Jackson. As I pulled his Caption America autism shirt over his head, onto his shoulders, guiding his arms through, he asked me why he was wearing blue like Hayden.
My mom brain took note, or should I say my special needs mom brain took note that he 1) could tell me the color and 2) noticed the similarities, grouping their shirts together by color and 3) the fact that he asked me a “why” question.
It was then I realized something – it rose up from my heart, warming my cheeks, coating my eyes with water, and into my temporal lobe – Jackson doesn’t know that he is different.
The first year after his autism diagnosis, I told everyone, even complete strangers in the grocery aisle (I’m not kidding) that he was autistic. I bought bumper stickers, T-shirts, wrists bands supporting autism awareness. I read a plethora of books on autism and sensory processing disorder. I even made videos about his journey on FB live, which the thought of doing now so just makes my anxiety cringe. But I wanted people to know that we weren’t going to hide him or dismiss him. We heard things about how lucky we were that he wasn’t “that bad” and “he could always be worse.”
Naturally, people think autistic people are either Einstein or Rain Man (if you read my blog, this is a perfect example of “all or nothing” thinking). I would get so frustrated with people when they said such things or asked if we think vaccines caused him to be autistic (FYI, vaccines don’t cause autism, so save yourself a butt-chewing and don’t ask). Then I remembered how uneducated I was before his diagnosis, would I be mad at my younger self for not knowing such things? Of course not, I was simply uneducated. Actually I hate to use the word uneducated, I’ll just say that I was unaware. And now, 18 or months in post ASD diagnosis, I don’t tell people that he’s autistic unless it’s medically necessary. He’s a typical five-year-old who just happens to jump, bounce and hum while looking at the ceiling when he gets excited, and he happens to have no boundaries (so he’s friendly) and he has no spacial awareness … basically he just needs to be wrapped in bubble wrap and we’ll, don’t we all? Honestly, it sounds kind of amazing and the sound of bubble wrap is so nostalgic and therapeutic. I think I found a new form of therapy, don’t anyone steal it so I can make some moola, okay?”
He also happens to have a lack of filter, which is hilarious and refreshing. He teaches me more than he knows as a recovering people pleaser and as such, this is why I worry about his public school days. I know that one day I’ll realize that it was silly to worry but telling a brain full of worries and anxious thoughts to “chill out” or “relax” has never worked once in the history of mankind. Psst, it just makes you have anxiety about your anxiety and that is a rabbit hole NO ONE wants to go down, trust.
Tonight, Jackson has his Kindergarten assessment tonight and well … by school standard’s he didn’t do great. He wouldn’t say his name – scratch that he did say his name and he’s now Batman Alexander. Kudos to him for finally saying his middle name but when I asked him his first name, he was confused. I repeated the question and … nope. He said he couldn’t remember. He just said his name was Batman Alexander. My heart started to sink. We say his name more than a dozen times in one day and he couldn’t remember? My special needs mom brain swooped in to save me – he’s having an off day. He knows his name, he just doesn’t want to show off his skills. You know he is brilliant and he will shine for his new teachers and school and they will see how incredible he is.
Honestly, he had three hours of ABA therapy and three hours of preschool today … would you want to be asked what color that circle is for what probably feels like the 100th time today? No, you’d want to be left alone to veg out and watch videos, too.
We (our Parents as Teachers teacher and my husband and I) tried to explain to him that he would be starting a new school in the fall and he had no idea what we were talking about . FYI, if you want to know what mindfulness is – it’s living like Jackson. He only cares if he’s happening right now. He has no concept of time, dates or future plans. He takes life one day at a time. He is teaching me so much about my myself, it’s insane.
As we ended the PAT session, it hit me again – he doesn’t know that he is different. But someday he will – how will I explain this to him? In a perfect world, I wouldn’t have to know because why would he need to know unless medically necessary? Maybe for better understanding of one part of him, but that is all autism is – it’s just one part of him. But I’ve lived long enough and was bullied enough in school to know that being different is something some kids do not understand and therefore they tease and make fun of you for being differnet. I know that bullying has changed but I also know that it’s still the same. I couldn’t help but think of the day of when he comes to me in tears because someone was mean to him or called him “retarded” or “off” because of his stimming or he ran into a pole or something else stationary and every laughed and he was confused and saddened. We have already had issues with him coming home upset because someone at his preschool laughed at him and he didn’t understand what was happening.
There is no doubt he will make friends but there will be that kid. You all know what I am talking about. There is always that kid in a school. And I can’t save him from it – as much as I try – I can’t keep him sheltered. I know moms of neurotypical kids worry about this but I feel like special needs mom worry so much about stuff like this that we need a badge, a gold sticker, free gas for a year – something.
Congrats you just worried about your son’s well-being for a total of 800,000 minutes this week – you get a gold star and free gas for the next year!
I don’t know what I will say when that day comes but I’m realizing it’s sooner rather than later. Maybe I still have a few years, maybe not, all I know is that he may not know that he is different but he does know that he loved deeply by his family, and we could not picture a world without him in it. He gave us a good scare (two weeks in the NICU, emergency C-section due to low fluid and frank breech) when he was born but he was just showing us how much of a fighter he is and that he does things on his own time, to hell with anyone else’s. He knows that we love his humor, which is full of poop jokes like any typical five-year-old. We love the way he questions things and how he just says exactly what’s on his mind. We love that he’s obsessed with Batman and the Joker. No doubt he will write Batman on his papers as his name at school, you watch. We don’t mind when he jumps and hums because he’s smiling – he’s happy. He’s just so happy, he just has to jump and hum it out.
He’s a happy, sweet, loving (as in “mom I hug your face forever” kind of loving) funny boy, who negotiates how many bites he has to take of a food he doesn’t care for like he’s trying to negotiating a peace treaty between two countries. He has nightmares about tornadoes and the snow monster from “Frozen. He hates vegtables, like 99 percent of kids.
He’s your typical five-year-old boy, who just happens to be a little different. And he has no idea for now … and I’m going to savor every moment of it and trust God to give me the right words when the day comes. But for now, I’m going to take a deep breathe and go because someone needs to “hug my face forever.”