Tuesday, April 15, 2014

Zen and the Art of Oversharing: How You and This Effin' Blog Saved Me

A year ago, I felt exhausted, pissed off, and alone.

The boy wasn't sleeping, he was having behavior problems at school, and some potty-training relapses.  Every afternoon, I would anxiously open the communication book, silently praying for good news.  My stomach would twist in a knot when there wasn't any.  I spent my evenings cleaning poop, my nights in a groggy purgatory between sleeping and waking, and my days fueled with crazy amounts of caffeine.  Our speech therapist broke up with us, our occupational therapist was out-of-network, and the bills were mounting.  I was an angry, twitchy stress-ball.

And nobody had any idea.

Surrounded by well-meaning people who didn't understand our situation, I put on a brave face and acted like everything was fine.  I was complimented about my "great attitude" and told that God must have chosen us for this special assignment.

"I don't know how you do it!" they'd say.

"I don't do it!" I wanted to shout.  "I'm hanging on by a fucking thread and it's all I can do not to scream at you for your seven hours of sleep and your normal-people problems!"

Good, good people would give me books about Temple Grandin, and instead of feeling grateful, I wanted to throw them at their heads.  You know, that's really great that she's this brilliant scientist/researcher/professor, but my kid can't wipe his ass, I'd think to myself.  I wasn't ready for Temple Grandin.  I still don't think I'm ready for Temple Grandin.  (With all due respect to Dr. Grandin...but we're still in triage mode most of the time.)

Meanwhile, I had this secret little blog that I would write when I felt frustrated or worried and confused.  I didn't show it to anyone.  I wanted it to be a place where I could yell at the world without worrying that the world might yell back.  I vented, but it did nothing to make me feel better.
Another Pleasant Valley Sunday...

Then one day, I read a post by Autism Daddy that sounded so familiar, so like my own feelings, that I took a risk and put a link to one of my posts in the comments.  A stranger on the thread read it and messaged me to tell me that she liked what I wrote and felt the same way.  She sent me a friend request.  I accepted.  This was the first time I'd ever accepted a request from someone I didn't know in real life, but as we exchanged short but important messages, I felt like I DID know her.  (Yes, Amy.  It's you!)

Then I discovered Autism with a Side of Fries, and that settled it.  I had to "come out."  Here was a woman who was somehow inside my head, and being a Jersey Girl, she even sounded like me!  And she was telling her story and she was funny and honest and I thought, I bet that feels good.  So I showed her my blog, and she showed Fry Nation, and the rest, as they say, is...

...Where the story really begins--when I found my people.  When I found people who didn't wrinkle their noses and say, "Oh, really?" when I mentioned some simple term, like "fecal smearing."  No nose-wrinkling here!  Just head-nodding!  Just, hell-yeah-me-too-poop-is-everywhere-but-what-can-ya-do-right?

I wrote about poop and people didn't act like I was pathetic.  I wrote about sleeplessness and nobody suggested we try a "bedtime routine."  I wrote about the full moon, and instead of telling me that I was being superstitious, people said, "My kid, too."

I realized that if you get enough of the right people together, our wildly stressful, insanely funny, batshit-crazy existence can seem kind of normal.  Our normal.

It was the best feeling in the world.  I finally found people who understood, and I'm so, so grateful.

Finding these friends hasn't fixed anything, but it's changed everything.  My kid still has sleep problems.  My kid still has behavioral issues.  My kid still has ass-wiping difficulties.  Autism isn't going anywhere...but now I'm not going at this alone.

How can I show my appreciation for all the support I've found this year?  How can I tell you that you are more effective than a therapist and a helluva lot cheaper?  I couldn't come up with a poem to express how much you all mean to me, so I'm going to leave you with the words of my favorite modern American philosopher:

There's not a word yet
For old friends who just met.
--Gonzo the Great



  1. HUGS my dear friend.... and YES this damn Blood Full Eclipse Moon can fuck off NOW!!! day 3...im only on day bloody 3... and tonight at 8:30pm she is bouncing higher than tigger... cos hey even with black out blind it blasted day light in the bedrooms. ..guess we're legoing and dvding for god knows how long...oh and don't stress about the books that are given to you. .... just remember that they look great on the coffee table (hahaaaa..... mine are used as door stoppers!) ♡ WE GET YOU! ...hey your me just on the outside of the world!

  2. Fist bump my fellow Jersey Girl! First round is on me if you come down the shore this summer. :-).

  3. I love this post!! I will forever be thanful for the day my friend posted the Freddy Mercury meme by Autism With a Side of Fries (feeling like a rockstar when your kid tries a new food) to my wall. I had no idea pages and blogs like this were out there! You bloggers are so brave and honest; I wish I could hug you all! Thank you. You are what built these online communities, and I am so greatful!
    Don't feel too bad. I am not ready for Temple Grandin either. Sounds fascinating, but not yet.

  4. Especially as my kids became older, and our problems more complex as they were colored with puberty, fewer and fewer people had sympathy. Horror, yes. But mostly they just wanted to hurry past. Our problems were too overwhelming to contemplate and so they ignored. The internet saved me at every step of our journey. I can't stand sugar coating, so I love blogs like yours. I post only 1/10 of our actual lives on my home page on Facebook. The rest go to my special friends and my blog.

  5. Another fist bump from the midwest! You summed it up in your sentence "Finding these friends hasn't fixed anything, but it's changed everything." Hugs and keep writing!

  6. I loved this post! I recently found Autism Daddy and have finally discovered a world of people who truly understand what our life is like. It is a rare and beautiful thing and I want to say thank you to all of you who put your lives out there on the internet for all of us to see. It means so much to know we aren't alone :)

  7. Totally lived your world, now tromping through teen male adventures.. like how do you talk about sex, masturbation, girlfriends, drugs (thank you dare program) and why you don't hang out on corners with guys with colored hankies on their heads or why we dont discuss proper laundry collar cleaning with strangers...

  8. Sometimes I think that if I have to watch one more goddamn episode of Naruto I will--I will--I don't even. This blog is a blessing. My guy's 20 now and it all still resonates, not because he still has those same behaviors (he has different behaviors! Except Naruto), but because it doesn't matter, we still live in this batshit world with all you other people who know. And I am very grateful you're here. Very grateful indeed.

  9. Loved reading this post!! It is always so good to find people who know exactly what your world is like....the good, the bad and the poop-smeared! ;)

  10. glad you are making some connections. Glad you shared this blog with me.

  11. You are my therapy. Thank you!

  12. I've only recently found this autism blog community where it feels like finally someone understands!! Thank you for sharing your story b/c it feels like my story, and that is powerful in itself.

  13. I have quit and left other autism online groups (ahem, MyAutismTeam) because I could no longer control myself when some thoughtless ass would pop up to make really obvious suggestions (like, have you tried a routine, or, how about asking her to stay away from the bullies, or even, just take her to the park or to the zoo!) and it would be in reply to a post that wasn't asking for help, just venting. Most of the time we just need to hear the other similar stories of others (so we know it's not just us), not suggestions. I have never once tried a suggestion from anyone because 1. I already tried it (duh! thanks but I have a brain too and I can use the internet to research stuff too!) or 2. it's a really unrealistic suggestion straight out of Parenting mag or something that only a stepford mom could pull off and sorry I'm a real person who is exhausted!

  14. "I was complimented about my "great attitude" and told that God must have chosen us for this special assignment."

    THIS. I know they mean well, but I can't stand it when I hear that because I want to scream "I DON'T FEEL SPECIAL, I FEEL SH!T ON MOST DAYS" but you can't say that because then you're a horrible parent, but I'm really not. I'm just human.