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.

Mother's Little Helper

What a draaaaag it is getting o-old!

This song pops into my head every time I wash the makeup off my face.  I'm currently battling zits and wrinkles--how unfair is that?

And then I think, "Fuck you, Mick, you smug little shit.  If you were my kid, I'd pill up, too."

The song resonates with me and pisses me off at the same time.  So much of motherhood--and NOBODY wants to talk about this--is a drag.  It's boring.  All the stuff we have to do--cooking and cleaning and signing forms and checking homework--it's important.  I know it's important.  But it's not intellectually stimulating.  It's a drag.

And though she's not really ill, there's a little yellow pill
She goes running for the shelter of a mother's little helper
And it helps her on her way, gets her through her busy day

Despite the condescending tone, I get why the mom in the song wants her little yellow pill.  You do all this boring shit for the people you love, and they don't appreciate it.  How do you deal?  I'll admit that once or twice I've been guilty of HUI--housework under the influence.  With a nice little buzz on, the work I was doing seemed relevant.  It was an act of love rather than thankless drudgery.  I'm washing their socks because I love them and I want their feet to be warm.  How nice for them to have clean socks that actually match.  Underwear, too!  I'm such a good mom--hic!

But sometimes the problems go beyond laundry being a drag.  Sometimes things get darker and more panicky.  Sometimes a glass of wine or laughing at my problems doesn't do it anymore.  Sometimes anxiety and depression are here, in my house, and getting in my way.

Things have gotten worse than having to resort to instant cake and frozen steak.

A while back, my friend Mama Fry wrote about the time she admitted to herself that she was experiencing burnout and needed antidepressants.  The piece, called Paper Gowns and Prozac, is brave as hell and got me really thinking about it.  And thinking about it.  And telling myself that I didn't have time.  And telling myself that things would get better if only...

If you haven't read it, please do.  The first time I read it, I nodded my head.  I reread it today and cried.

That piece was published in October.  I finally made the call today.

Go the Eff to Sleep: Stuff We've Tried That Worked for a Little While

We're tweaking his meds again.  He's not sleeping.  It's a cycle.  We see his developmental pediatrician--a wonderful woman who actually listens and understands that three hours of sleep a night is not sustainable--and she tries to fix it for us.  She changes up his meds and he sleeps well for a couple of weeks.  Then we're back to the midnight madness.  This time, she's ordered a EEG and a sleep study so we can get a better idea of what the eff is going on.

I'm going to stab my eyes out with these knitting needles.

We've tried it all.  Here's a list, in no particular order:

1.  Melatonin as a verb.  It is a verb in our house.  An active verb:  Did you melatone him?  A passive verb:  Has he been melatoned?  The answer is yes, and it doesn't friggin' matter.  It does nothing for him anymore.  (Knocks me on my ass, though.)

2.  Meds.  Clonidine, Tenex, Risperdal.  As I mentioned before, they work for a little while and then quit.  My husband and I try to squeeze all our movie-watching into those few days.

3.  Sleep CDs.  We once burned out a cd player playing Sleeping Through the Rain on repeat all night for months on end.  Don't think the boy noticed, but it worked really well on me, which is why I will never go to one of those hypnotist shows.  I'd be that crazy bitch on stage clucking like a chicken and then denying it later.

4.  Driving around in the middle of the night.  When the boy was still light enough to carry from the car without waking, I'd take him on drives.  I once came upon an animal convention in the middle of the road.  I swear, there was a deer, a raccoon, a possum, and a rabbit, and I think they were discussing something important before I interrupted them.

5.  Epsom salts baths.  This is a cheap solution, and if he drinks the bathwater, it's a natural laxative.  Our local store stopped stocking the plain kind, so we tried the chamomile and lavender salts, which made the boy smell like my Aunt Agnes.

6.  My nightshirts.  For two glorious nights in a row, the boy brought one of my nightshirts to bed with him and slept all the way through.  He likes my nightshirts because they all have cartoon characters on them.  (How does my husband resist me?  I have no idea.)  I think he was reassured by the Mommy smell.  For two nights at least.

7.  Videos.  Good Night, Gorilla.  Good Night, Moon.  Raffi.  You name it, we've tried it.

8.  Grandma's House.  Every once in a while, my in-laws will take pity on us, and take our kids overnight.  (Those nights are the best because we sleep like it's our job.  We pull down the shades, take some Tylenol PM, and it's Enter Sandman.  We take this opportunity seriously.)  Then we find out the next day that the boy slept just fine.  I'm convinced my mother-in-law is some kind of white witch.  Or maybe it's their Tempurpedic mattress.

So...whatcha got?