The Effin' Uncertainty

When I was the mother of one neurotypical child, I bore witness to what I thought was much needless parental hand-wringing.  I would hear mothers lament, "Parenting is so hard!  Children don't come with instructions!  It's so difficult to know if you're making the right decisions!"

And I would wonder what the big deal was.  Yes, parenting was difficult, but what were the tough choices?  I knew what the "right thing" was.  Teach him "please" and "thank you".  Have a consistent bedtime.  Sweets in moderation.  If he doesn't want to play sports, don't make him play sports.  If he wants to play sports, let him play sports.

And no, you don't have to hire a freakin' batting coach.  This is tee-ball, people.

I may have been a tad smug, come to think of it.

Well, if neurotypical children don't come with instructions, imagine the plight of the autism parent.  No instructions!  Conflicting instructions!  Instructions that suggest if you eff this up, your child will lose any chance of becoming a contributing member of society.  Instructions that suggest that if you use the wrong instructions, you're violating your child's individuality and person-hood, and scarring them for life.  You're compromising their immune systems.  You're poisoning them.  You're not advocating enough.  You're enabling them.

In short, you suck.

For the most part, I've managed to avoid these conundrums by going with my gut.  But it is hard to know if you're making the right decision.  Here's a sample autism parent test question:

Your child is displaying aggressive behavior at school.  Do you:
a)  Call the school and ask for a meeting.
b)  Call your doctor and discuss a medication change.
c)  Work with the therapist on new trials to address this behavior.
d)  Make changes to his diet.

The answer is:  YES.  (At least that's how we roll.)  Because you are in crisis mode, you want the problem fixed immediately, so you try everything.  And maybe something will work, but you won't really know which something worked because you tried everything at once. 

Autism doesn't lend itself to scientific method.  There's no time to hem and haw.  Decisions must be made.

I must always have glue.

We had a hand-wringing crisis recently regarding home ABA.  We initially started home ABA to address some behavior concerns and teach him more "productive play," since his main form of entertainment was snapping the heads off of his Disney figures.  After two years of fairly good sessions with the glorious Miss T, his therapy hours were increased.  Another therapist was added and the new guy couldn't get anything out of him.  The boy resisted, and even laughed at the new guy.  Then even the glorious Miss T couldn't get him to cooperate.  It was a tractor pull, and miserable for all of us.

I really struggled to figure out the right way forward.  I wasn't going to torture my child, but I also felt it was our job to help him as much as we could.  Why battle over getting him to play Connect Four if he didn't want to play Connect Four?  A negative experience wasn't going to encourage interactive play.  So I laid it all out for the team.  We need new goals.  The therapy has to change or we're out.  So it changed.  Apparently, the new therapist wasn't following the program.  He was replaced and the new new guy works well with the glorious Miss T, and things are calming down around here.

Everybody's happy for now...until the glorious Miss T goes on maternity leave!  And then there will be more uncertainty and angst.  Perhaps if I offer to watch her baby, she'll come back early! 

Ha.  I am certain that that is not going to happen.

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

Peace.