My first exposure to Facebook was forced, a vetting of a "new site" to see the pros and cons. And although the initial week or so was filled with borderline amazing "ohmygodyou'restillalive?" moments, after about a month, all my 'friends' kept sending me painfully annoying shit from Farmville. Why? Why are you doing this, friends? So after I deleted them, and blocked Farmville apps, and then made myself unsearchable so I could avoid feeling guilty about not accepting their repeat friend requests, it really limited whatever utility Facebook ever had in the first place. So my profile collected dust.
I figured, okay, I'll try it again; I'll really get into it, comment the hell out of people I know, post stuff, look at their stupid lives and feign interest (teasing, of course). . . and for whatever reason I was looking for Autism charities and "liked" Autism Speaks' profile. I have since read a lot of negative shit about Autism Speaks, but I didn't know any of that then, (not sure that would have mattered regardless) and I knew who they were, and Lily is on the spectrum and so I "liked" them but didn't realize that meant I would start immediately getting aggressively invasive updates and statuses and stuff from them, because I was still pretty green about how Facebook "worked".
One of the first statuses I got from them was a link to Lou's Blog. Or, more precisely, a link to the video that Lou had posted on his blog "Fixing Autism". And I'm like, "alright, I'll go look at this video". So I did. Well, about one minute in, I was crying like someone stole my last Cheeto and had to close the door of my office for the duration of the video and compose myself. His daughter could have been my daughter. It was no great stretch to put myself in his place and empathize totally and completely. I forwarded it to my wife.
Admittedly I don't remember much about the slips of paper he presented showing stats or his arguments for why autism is under-researched/funded. What I did remember were these words ". . . I can guarantee that she will be the best Bianca she can be", that I adapted to my own promise to Lily, "I will help you to be the best Lily you can be." They sent a thrill up my spine when I saw them. They communicated directly with my heart. That was what I wanted for Lily. I don't necessarily agree with everything Lou's video says (I don't disagree either, but I can't remember it all, and until I buy more tissues for my office I'm not watching it again), but I think it's safe to say that, without knowing what Lily will become, I will help her to become the best whatever that she can be.
Afterward, I followed Lou's video back to his blog. And after I read his blog, I linked to a few others. And then I started following them, and commenting them.
I'd always blogged, but it had been a diary of sorts. I still enjoyed the writing, and even enjoyed rereading what I'd written (on occasion) but I wasn't necessarily writing for others. If a tree tells an amusing story in the forest and nobody's there to hear it, does it make a sound? I don't know, but I had been blogging with nobody but me to read it. So I thought. . . why not make a blog that I intend for people who are not me to read. . . then actually go out and find other like-minded bloggers and follow them and get little insights into what other parents with kids on the spectrum do?
I'm pretty guarded about my emotions in general, but I find writing cathartic, and when I'm doing it, I feel almost disconnected from the emotion of the words, an impassive narrator of the story instead of a character living it, shielded from that feeling of "laying it all out there" by the screen, or the page. I can say things in writing that I'm uncomfortable saying face-to-face.
I've been a participant in Lily's meetings and therapies and feeding all her life. I just haven't been an active participant. Or at least as active as I needed to be. My wife started to notice I was doing more with Lily. I was trying to feed her more (often an extremely stressful and frustrating task). I was more patient with her. I was taking her to the grocery store and to the eye doctor and other things. The more time I spent with her, the more time I wanted to spend with her. I didn't seem to matter whether we were having good times or bad times. . . we were sharing time, and that's what mattered. And I still lost my temper and patience, but I handled the bumps along the way with a little more grace, understanding, compassion and forgiveness. My wife attributes the improvement to Lou's video.
Personally, I think I'd been making a concerted effort for months, and she just finally noticed, but . . . I'll give her the benefit of the doubt.
I still have very little use for Facebook. I find that most of the time I spend commenting or interacting goes unnoticed and unrequited, and I'd probably delete it if it hadn't insinuated itself so ubiquitously across platforms and websites to the point where not having it means not having access to other things. But it did introduce me to Lou's Blog. . . and Lou's Blog woke me up from my parental stupor and introduced me to a whole community of parents of autistic kids, some venting rage/sorrow, some injecting much-needed humor into stressful topics; a faceless support network that I probably didn't even know I needed.
I like to think I can handle all life brings me without needing anyone's help or comfort. My carefully cultivated emotionless pseudo Vulcan exterior is more comfortable for me than the feeling of being beholden to anyone or of having to talk about "feelings" in the first place. But the past has taught me that although maybe I can handle it, it's easier, it's better, it's more manageable and less stressful to have the help and support of friends who know what you're going through. Even if some of those friends are faceless.
