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.

This Ain't Nothin'

A few weeks ago, I was in a community theater show called Moon Over Buffalo.  It's a comedy about a pair of aging stars, a scandal, and backstage hijinks.  Everyone associated with the production--actors, director, costumers, crew--was lovely and supportive and fun.  The audience laughed.  A good time was had by all.

I'm so glam.

This was huge for me because I was doing something for myself that I loved and hadn't done in so so long.  Theater used to be a huge part of who I was, and it had all but disappeared from my life.  I hadn't set foot on stage in 12 years.  Friends congratulated me and then asked the inevitable question:

"Weren't you nervous?"

And here's the surprising answer:  Not at all. 


I couldn't have been more surprised by my total lack of nerves.  Back in the day, I would pace frantically before the show, fighting off the urge to puke.  Once I got on stage, I'd settle down, and eventually have fun.  But beforehand?  I would be a wreck.  Not this time.  I still paced, but just to get my energy level up, not out on anxiety.  Before my first entrance, I took a breath, turned the doorknob, and walked onstage as if I belonged there.

Like it was no big deal.

Because you know what?  In the grand scheme of things, it was no big deal.  With all the crazy autism stuff I deal with, not to mention teaching snarky adolescents while being a mother to another snarky adolescent, it seemed like putting on a costume and pretending to be someone else was the easiest part of my day.  It was even a relief.

The advantage to being an autism mom is that situations that scare other people are nothing to us.  Our everyday life is so effin' hard that perceived challenges can seem easy.  Face it:  What's easier than being a special needs parent?  Um, pretty much everything.

Whenever I face something difficult, it helps to remind myself that I've already dealt with worse.  So when the Boy had a meltdown in the car the other day because he wanted ice cream and french fries and doughnuts and snow and Santa and Baby Jesus (I kid you not), I knew nothing would placate him.  But I'd seen worse--much worse--so I decided to focus on my breathing.  Breathe in for four....breathe out for four.  Breathe in for four...breathe out for four.  Resist the urge to scream.  Be all zen and crystals and patchouli.  Think about breathing and yoga and Rodney Yee in his tiny hot pants--God bless him--and resist the urge to yell.  And it worked!  I stayed calm.  Eventually, he burned himself out and we went to the park and played on the swings and all was well.

I just have to remember that I've seen worse.

Or, to quote the hobo in Slaughterhouse Five, "You think this is bad?  This ain't bad."*




*All right, if you've read the book, you know those are the hobo's last words, so I may also be making a secret ironic point here.  So it goes.