In one of my first Instagram videos, I said that the online influencer world doesn’t speak to special needs dads. There just isn’t much for us to connect with, and the rhetoric they push falls pretty flat to guys in our situation. But there is so much that’s even deeper than that. Because social media can be a fucking disaster for dads of disabled children.
When would you say you became a “special needs parent”? It can be different for all of us. It may have started immediately at birth, maybe after a diagnosis, or regression, whatever. But after that point follows a rough road, and it can last a long time and can be very lonely and isolating. Social media is there. It’s an escape, calling to you on your phone (alongside endless gambling apps, but that’s another story). Did your son or daughter puke earlier that day at a restaurant? Dreading that doctor’s appointment tomorrow? IEP meeting coming up? No worries, you can just tune out and look at Facebook.
It’s not that we don’t know that it’s not helpful, or even harmful. It’s that this life of ours is really freaking hard, and social media is really easy. So the temptation to just check out is so real that you can physically feel it. And I know it firsthand. You wouldn’t believe how deep I got into what they call “Footy Twitter” (soccer for my North Americans) when I was struggling big time several years ago. I’d spend at least an hour a day just consuming tweets about stats, rumors, transfers, tactics, anything to get my mind off the fact that I didn’t know where I was going in life and avoid the stress of whatever crazy thing happened that day.
It sounds fairly innocuous though. What’s an hour a day? Isn’t that a good stress relief just to tune out for a bit? The problem is the designed stimulation of social media on your brain. It’s literally meant to be addictive and keep you thinking about it, even after you log off. What does that mean in practice though? We hear about this stuff all the time, but no one really labels the real-life scenarios. The danger was that my focus for the things that I really needed to be thinking about was damaged. Was there any new research on building the neural links in the brain for children with cerebral palsy? I didn’t know, but I did know Liverpool FC’s entire transfer rumor list. Because that was far easier to think about and spend my time on.
Two things can be true here. One, you are an adult and capable of making whatever decisions you think are best for you. And two, fuck Mark Zuckerberg. That guy sucks. So I guess what I’m saying is, don’t let social media win. If you have healthy boundaries and a strong backbone, then cool, scroll away. But don’t let it come at the cost of your brainspace and your ability to show up every day for your kids.
Focus of the Week
This week I wanted to highlight the work of a therapist who we connected with and have the fortune of visiting. Dr Bor isn’t afraid to utilize up and coming therapies, technology, and is always on the lookout for things that can improve the fortunes of our kids. He takes some heat from classic, old-fashioned medical providers but I appreciate someone who utilizes tried and true methods and updates them to include the newest ideas and breakthrough technologies. As you’ve probably experienced many times, just because a therapist or medical provider has been doing something a long time doesn’t mean they’re great. Always be learning!
