I was surfing Instagram this weekend and was inspired by a post I saw, where a gorgeous influencer was espousing body positivity by showing her bikini, made-up photos before-and after the filters and photoshop were applied. It got me thinking about the photos I post on social media, or updates I post on Facebook about what we are up to.
I try to keep things real. It is really important to me in this stage of my life, that I am as authentic as I can be and work hard to be the same person on and off the screen. It often means you get to hear a lot more whining than you want to, but that’s the price of honesty. When it comes to sharing my kids with you, there is absolutely a huge portion of their life that I keep private. Respecting their privacy is balanced with the desire to share the real and sometimes unpleasant realities of living with autism. I often have to make assumptions about what Owen and Will would want, given that they can’t communicate their wishes with me. Both are showmen and love praise and attention and I have to believe that if a kid like Will can figure out how to create his own YouTube account and garner millions of views, I think it’s safe to say he is okay with putting himself out there.
But even when disclosing truth nuggets, there is still a lot I hold back. After eighteen years with these guys, I’ve accepted our life as normal. Quite often I forget that aspects of our life are hard to believe or challenging, until someone points it out to me. And on the flipside, sometimes I know how crazy things are, but the details are too difficult and time consuming to put to words. And on those really tough days, it makes it really easy to post the shiny, happy photos because we worked really hard to earn them.
So in this spirit, here is a little hypothetical fun called:
What you see vs. What you’re glad you didn’t
- “Had a great day at the beach today with Owen and Will”
Beach Day was put on the calendar a week in advance and discussed every single day leading up to it. Will likely asked for “beach” at least 2 kajillion times before the big day and had his swim bag with goggles on, waiting at the door every morning. Preparation for the outing includes a breakdown of the rules and expectations (threatened consequences) with Will. Time is spent on Google Maps to make sure I have a complete understanding of where the parking lot is situated in relation to the water, so I know exactly where I am headed to. If I’m alone with the boys, I need to make sure the car is within view from where we end up; I can’t risk a run-away on the walk back and I need a quick get-away if someone has a meltdown. The drive to the beach is pleasant enough, but we pass tons of places I’d love to stop at to eat or shop, but can’t, because there is zero chance that I can safely bring both boys into the store with me. I need gas but can only get it from a full-service station (and there are very few left out there), because last time I went in to the kiosk to pay, Will decided to make a run for it when I left him in the van. As soon as we hit the beach, the kids take off ahead of me, leaving me with a million bags to carry on my own. By the time I hit our spot to lay down the towels, Will has already stripped and is running buck naked into the water. Might have been cute when he was 4 but he’s a full-grown teenager now and I have a lot of explaining to do to the people on the beach who are now shielding their little kids’ eyes and hiding them behind their legs to protect them. Poor Owen hangs back while I’m chasing Will and knows to stay put at the towels, thankfully. But now my heart is pulled because I know Owen’s passive acceptance that he has to wait, means he probably won’t get to do all that his own heart wants to today. After 15 minutes of me yelling at Will to come back to the shore because he keeps swimming further and further out so he can let himself sink to the bottom and stay down there presumably to feel the pressure, he comes back to flop on to the towel, throw his clothes back on and then starts walking back to the car, announcing “go home”. After a two hour drive to get here, Owen is just settling in and Will is already done with the beach trip. I manage to snap a selfie of the three of us and off we go.
- “The boys and I took Winnie the Pug to the vet today”
True story. Winnie’s vet (used to be) in Cavan, Ontario, a little township 50km away from where we live. I chose it because it was a country vet and the costs were more than half what we would find here in town – it was worth the drive. This particular day, the boys happened to be with their dad and we had made arrangements for him to meet me at the vet since it was close to his house and it would save him the drive. With Winnie back in the van, J showed up and we buckled the boys in. J drove away and I asked the boys to close their doors. I’ll interject in the story to remind you that Owen has superhuman strength when he activates it and he is aggressive in most of his movements. So SLAM went the sliding van door, it knocked the rubber stopper off the end and it slid right off the track, dangling outward from the still-attached bottom wheel. Cursing the whole time, I got out and had to heave the door back up to align it with the track. But guess what? The little wheel wouldn’t fit back in. I spent over an hour smashing that little wheel into the metal track until I bent it enough to fit, fished the rubber stopper out of the tall grass and smashed it back in place. Hands bruised, doors locked so Owen couldn’t touch it again – I drove home white-knuckled in fear that the door would slide off the track on the highway. It was definitely not the last time it happened and was just one more anecdote to add to the pile of “weird shit that happens to this family”.
- “Thank you so much to our friends for helping us hunt down the stuffed animal Will has been begging for”
Backstory on this has been told many times over, so if you know Will, you know he OBSESSES and fixates on ideas, driving me to want to jump off a cliff if I have to hear him ask one more time for it. The problem is that he is almost always asking for something that was produced in his toddler years (2003-2008 or sooner). He’s not happy with the re-released Christmas Eve on Sesame St. dvd from 2019 – he wants the original, released by Sony Wonder on VHS in 1999. So what I don’t like sharing, is when the initial honeymoon period wears off after opening a package in the mail and seeing his treasured stuffy that has likely traveled overseas or at the very least, from across the country, Will finds something wrong with it. A scuff in the fabric, or a small tear in the stitching. And the bummer that has come with Will’s maturity, is that he has figured out how things work, so you can’t sneak things by him anymore. In this case, it means that Will has figured out that if something is broken, or has disappeared, it is more likely to be replaced. What he hasn’t figured out, is that we don’t just replace everything because he demands it. We wait for Christmas or other holidays. But he keeps trying. So when the stuffy is found faulty, it “disappears”. I’ve caught him in the garage, burying his new toy in the bottom of the garbage bin. After I’ve dug it out and given him a tongue lashing, this kid has found a new level of smarts. I caught him feeding his stuffy to the dog. Because he knows that the last time Rosie the Retriever got her paws on his Backyardigan stuffies and pulled the stuffing out of them, we got him a new one.
So if you wonder why sometimes there is no follow-up to a message on Facebook and you’ve wondered if Will found that elusive toy he was after, I probably haven’t posted about it because I didn’t want to disappoint you with the details.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.