Wednesday, October 26, 2011

Inspiration in Unexpected Places

I had decided I was giving Facebook another chance.  I wasn't using it, and honestly didn't really like it, but I was giving it another chance.

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.


  1. Okay - since you're all "puttin' it out there", I will admit that when I first saw you stalking all the blogs I stalk, I thought, who is this crazy character?! Where did he come from and why is he going everywhere I'm going? Then - I started really reading your comments, I laughed at your humorous remarks (they were supposed to be funny, right?) , your blog and I found out that beneath that crazy, humor-filled exterior, there is a wonderful, loving, devoted father and husband and gosh, darn it - I found myself admiring you! WTF?

    This was a beautiful and humorous post. I too, cried my eyes out when I first saw Lou's video, but hey, I'm a woman and that's okay. As for you? Good thing you closed your door. ;)

    And btw - I know you are just rejoining FB so you can get better birthday greetings next year... :P

  2. Thanks, Karen. Yeah, I got a zillion birthday greetings. . . THAT is the big facebook benefit. ;)

  3. oh. . . and who you callin' crazy???

  4. Beautiful post! I am all about my FB page and I have mixed feelings on Autism Speaks. I don't want to 'cure' my son of anything - I just want to help him become the man he wants to be.

    There is a similar video that a 16 year old girl made for her brother. It made me do the ugly cry at my cubicle. I posted to my blog - it's called "Retarded."

  5. Glad to have you, "male Karen."

    No seriously, reading and writing blog posts really helps. I never knew autism blogs existed until I found Extreme Parenthood while doing a google search for something to do with autism. I was instantly hooked, started reading more blogs, and it wasn't long before I had to have my say and start my own. It's cliche, but it's nice to talk to other people who really get it.

    Now all you need to do is to get Leslie to join in the fun!

  6. I'll ditto remarks from Karen and Christie. My first thoughts were... "hey! What's the deal-e-o with this new guy? He's got a litlle snark to him. I like snark!" After some lurking and a few comment-a-thons with the new guy, I find that he's got more than snark... He's got a big heart and a little girl who sounds so much like my own that I've got to pinch myself when I read his posts... I really like that.

    And your little miss has feding issues too, huh? Score another comonality... Now don't go telling me that she also happens to be a beautiful Korean adoptee because I swear I'll sue for copyright!

    And Lou's video... I tear up thinking about it. Yeah.

  7. I'd never seen this video, I initially blogged to just talk about stuff we were doing, but I've found so much more in it, and the support really is amazing. Especially in the autism community.

  8. I haven't seen this "Lou" video, but will have to check it out.

    As for the rest, I really get it. A part of me wants to stay disconnected and aloof, because I'm dealing with so much and there's so much in my head, I just don't have the energy/time/willingness to "connect" with others on a touchy-feely level. The flip side of that is that all the stuff I'm dealing with leaves me feeling completely alone out here on this journey. So I started a blog.

    I like it. It's like walking into a room full of parents dealing with the same crap, and you can just go slump down in the corner and be consumed with your own crap, and no one bothers you. Or you can get up and mix with the other parents. Either way, you're totally accepted and understood.

    As for Facebook, could you please send me an elm tree and some chickens??

  9. Why Mr. Jim, I do believe you just revealed a softer side of yourself to us. And I'm glad you did.

    I totally agree with you.

    And I like how Flannery put it, too. I call it "circling the wagons". After an evaluation or a tough day, I have to fight the feeling of just pulling my little family into a circle and shutting out the big, bad world and all the big, bad people in it.

    I started blogging as a way to keep friends and family informed but I quickly discovered how therapeutic it was to just write it all down.

    But then to hear back from people feeling the same way?? Well, I was hooked.

    Now I can't imagine going through this experience without all my online friends - including you, Jim.

    Thanks for sharing.

  10. @Lisa - Thank you. I have actually seen that video, and wondered which came first. Neither suffers by comparison, and my only criticism of the girl is that she spelled retarded wrong. The thought and feeling are there though, and I got misty watching it too.

    @Christy - she's enjoying the blog, and the comments. . . but she's bashful. She'll come out of her shell.

    @Mom2LittleMiss - She is NOT a korean adoptee. . . but the first time fell in love with the name Lily, an adorable little asian girl at my older daughter's daycare was wearing it. . . and I thought. . . I LOVE that name!!

    @Amy - what'd you think? Did it start the waterworks?

    @Flannery - the consumed with my own crap thing is the reason I don't watch Parenthood (though all the autism parents seem to love it). I just feel like I have enough real world drama, I don't need to get absorbed in make believe drama too. . . no matter how realistic.

    @Alongcameabird - tell NO ONE of this "softer side"!!

    Sorry it took me so long to respond (if anyone reads this followup). . . I'm currently in Wisconsin for my sister-in-law's wedding (see previous blogs). This has been my first real chance to sit down and type.

  11. I love so much about this post. I'm glad you're out here. I spend a lot of time being an idiot on my blog, but the truth is that I really wouldn't be where I am today if it weren't for my blog. Both my Jack and I have benefited immensely from that community out there.

    It helps. And I'm glad it's helping you and your Lily and your wife.

  12. @ Stimey - Yay! When snarky people compliment it's like a double compliment. . . because one. . . hey! no snark! and two. . . hey! A compliment!

    Although I do like me some snark.