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.
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| 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
Peace.