Saturday, April 26, 2014

Fakebooking and Lies by Omission

This is my Facebook status:  My son got the game ball!  I'm such a proud mom!  :)

And it's true.  Today was opening day for Little League and my older son's first time in the "Majors."  He pitched--one inning was a 1,2,3--and had a great offensive game as well.  He crushed a line-drive double off a smack-talking pitcher, but rather than talk smack back, he just nodded and smiled.  He stole three bases.  They won.

And I missed all but the last half inning.

My ASD kid, The Boy, had an epic meltdown before the game even started.  Correction:  It wasn't a meltdown.  It was a rage.  He raged like I have never seen him rage.  And he hurt me and almost caused a car accident.

Before the game, the boy asked for ice cream and to go home.  I thought, OK, I'll take him for some ice cream and we'll be back in time for the game.  I got him into the car and drove in the direction of the ice cream shop.  And for some reason unbeknownst to me, the boy utterly lost his shit.

I don't know what triggered it, but he started screaming.  He took off his glasses--new ones we had just picked up this morning to replace the ones he broke last week--and broke them in half and threw them at me.  I pulled over to see what was the matter, and he unbuckled his seatbelt and hit me.

No ice cream, then.  I re-buckled his seatbelt and drove home.

I don't know if I can adequately describe the trip home.  "Nightmarish," "terrifying," "horrific," and any other drama queen words would be an understatement.  He scratched at my face.  He pulled out chunks of my hair.  He kicked me in the head.  He screamed and raged and punched and bit and completely lost control of himself.  I kept having to pull over so I could wrench his fingers from my hair or his teeth from my arm.  Both of us were sobbing.  Who was this child?

We finally made it home and I ran him a bath to calm him down.  I sat on the bathroom counter and emailed his doctor from my phone.  I'm not sure what I wrote, but I'm sure it was an incoherent, blubbering mess.  I sent my husband a text basically telling him that I hated his guts because he got to coach Little League and do typical parent things and I got to get the shit kicked out of me.  (This was totally unfair of me.  My husband is super-involved with both of our boys.  I was feeling sorry for myself.)  I cried a little bit.

Something you should know about me.  We're four years into this "journey" (and you know what?  Fuck that term, "journey."  I hate it.) and I've hardly ever let myself cry.  We got the diagnosis and I cried for about 30 seconds and got to work.  I cried the first time he hit someone.  Oh, and I cry for happy things and every damn commercial featuring a dog.  But for myself?  Not so much.

So I texted my husband and asked how Big Bro was doing.  Turns out, he was doing great.  He was pitching great, and I was missing it.  And that's when I really broke down into big ugly tears with loud, heaving, grieving-whale sobs.  My kid pitched a 1-2-3 inning and I didn't get to see it.

Then I got a second text that he got hit by a pitch. 

"Get out of the tub," I said to the boy.  "We're going back to the field."

We got back in time to see the last three outs, which my son pitched really well.  The smack-talker, hoping to unnerve him,  yelled "FAIL!" just as he released the last pitch.  It did the little shit no good.  The throw was a strike and the game was over.  The final score was 16-4 and the head coach gave Big Bro the game ball.

So you see, my son did get the game ball and I am a proud mom.

I just didn't tell them the rest of it.

Now if I post the proud mommy moments, but don't share the nasty stuff, doesn't it stand to reason that other people do the same?  Fakebooking is like farting or picking a wedgie--everyone thinks they're the only ones who do it.

And by the way--next year, I'm attending coaching clinics.  I will assistant coach and my husband will wrangle.  'Cause eff it.

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


Tuesday, April 8, 2014

The Autism Commune in My Head

There are times in the middle of the night, when I get all woe-is-me because my kid won't sleep, that I'm so grateful for my cyber-friends who are up with me--either because their kids aren't sleeping either, or they live in Australia.  (I love the Aussies! Holla!)

 And then I imagine what it would be like if we all actually lived the beautiful autism commune in my head.  Would you like to take a tour?  (This is not real.  This is in my head.  I promise I'm not trying to sell you a time-share.  Go with it.)

First of all, it's not really a commune.  It's more like a gated community.  I'm claustrophobic and I would have to leave once in a while.  Anyway...

Welcome to Spectrum Estates, a judgement-free zone for families with autism.  Our community, bordered by a fence, has a security staff specially trained in helping folks on the spectrum.  Lifeguards are on duty 24/7.

Our streets are arranged according to sensory-sensitivity.  Sensory-avoidance homes are landscaped during the week while the children are at school.  The houses with sensory-seeking kids are landscaped on weekends so the kids can stim off the lawnmowers.  Ditto for leaf blowers and snow plows.  We don't worry about spraying for mosquitoes because this is my fantasy and mosquitoes don't exist.

The climate is warm; clothing is optional.  Obviously. 

There are several restaurants that cater to every possible food allergy and offer seating choices based on sensory preference.  Need booth seating for four in a noisy room full of music and balloons?  No problem!  Need a quiet corner with plush seats and bland food?  We can do it!  Our "date night" restaurant features a separate respite room that serves platters of tater tots and Yoo-Hoo.  There's something for everyone! 

Here at Spectrum Estates, we have a community center with specially-designed rooms for obsessions of all kinds.  Be sure to visit our displays of model trains and vacuums!  Our community center is a place for therapy and playtime, as well as respite care.  We have a gym, pool, climbing wall, and carousel.  There is a tiki bar--no cash necessary.  Expenses are covered by member dues and puzzle piece magnet fundraisers.  "Support Autism.  Buy this Mama a Mudslide!"

One of the best features of the community center is the Moonlighters room.  Softly lit and lined with comfy couches, it is a safe place for sleepless children be sleepless while parents nap or keep each other company.  A selection of bean bag and swing chairs are arranged in front of a number of dim screens featuring soothing favorites like Good Night, Moon, Baby Einstein, and Tales from the Tracks.  We shuffle around in our pajamas and snuggies and clutch cups of coffee or beer.  It looks like finals week in college...only with kids.

The center offers social activities and support for the siblings as well.  There's a specially-stocked kitchen in the Sibling Station full of all the junk food we can't keep in our homes.  They can eat gluten and food dye to their heart's content!  We have movie nights featuring anything other than Thomas the Train, The Wiggles, Blue's Clues, and Fraggle Rock.  Be sure to stop by for our helpful weekly seminars covering topics such as "So Your Brother Dropped Trou in Front of Your Girlfriend" and "Making Echolalia Work for You!"

And of course, the Spectrum Estates activities director organizes plenty of social and wellness events for the parents--yoga, book clubs, wine-tasting classes, wine-making classes, cooking with wine classes...

Everyone is invited to the birthday parties.  Nobody gets mad if you can't make it.  The playground always has enough swings and the trampolines are surrounded by crash-pads.  If your kid wants to wear a Santa hat in June, nobody asks why.  If your child insists on showing neighbors his plastic bug collection, there's no need to apologize.  If your kid is naked in the front window, nobody will notice.

"Spectrum Estates--Where People Get It."

Happy Hour is at 5:00.