Better Living Through Chemistry

Monday, May 21, 2012

We're a few days into The Great Melatonin Experiment, and we're definitely starting to see progress that goes beyond bedtime improvements.

To recap...

- bedtime had gone from an hour or so (assisted by visual checklist) of frustrating but more or less manageable predictability to 3-4 hours of crazy making, dysregulated, screaming, sobbing, nonverbal insanity

- it's been getting worse for several months, with him not falling asleep until roughly midnight (that's with starting the ritual around 8:30 and attempting to coach him through visual checklist)  (And no, we can't start earlier, husband doesn't get home from work until at least 7. This already has him brushing his teeth for bed moments after eating his last bite of dinner.)

- this disaster included him losing all of his potty training and starting from scratch with him basically in diapers again

- about three weeks ago he started waking up dysregulated and nonverbal on a daily basis. A recent 90 minute screaming breakdown upon waking up prompted my husband to have to rush home from work and an emergency call to our family therapist.

One of the first things she said was that he's not getting enough sleep (Uummm, yeah. Tell me something I didn't know.)  But rather than the predictable lectures about bedtime routines and visual schedules, she suggested we try melatonin.  I was more than ready to hear some new advice, and I'd heard that melatonin it was a common supplement in the spectrum community.

We followed her suggestion and called the pediatrician for dosage advice first thing the next morning. Because?  We were close to cracking. If we could get him on it THAT DAY, we were gonna.

It took another day to hear back from his doc, and then we were On. It.

Gave him the smallest dose per his neuro (1 mg).  Gave each other a hopeful look and went our separate ways - each with a child in hand - to begin what we assumed would be another long, hideous night of screaming misery.  Sometimes it's Bear screaming, and sometimes it's the baby screaming because he's overtired on account of his big brother won't be quiet for more than 3.2 nanoseconds and OMFG it's 11:13 PM we've been at this for hours please for the love of everything go the fuck to sleep.


Gave Bear his first dose of melatonin around 8:30 pm.  Around 9:45 my husband wandered into our room (where I was still attempting to get Baby T to sleep) with a goofy look on his face.

All I could muster was disbelief that Bear was actually asleep. And that it only took an hour.  And? AND?!?  There was no screaming.

That first night he slept nearly 12 hours, with only a brief wakening for his regular pre-dawn trip from his bed to ours.

Until now he'd been sleeping maybe 8 or 9 hours.  Some nights, 6 or 7. Or even 5.

His therapist also recommended a full meds eval because she's concerned about his overall behavior - particularly the increase in obsessive/compulsive behaviors.  But I was squeamish about trying melatonin... really really really not ready to discuss heavy duty medications with side effects significant enough it's made me unwilling to take them for my own OCD and anxiety.

We told her we'd put that idea on the back burner, hoping that if the started sleeping better the dysregulated behaviors would diminish.

Within 3 days (hell... within one day), things looked like they'll be moving in that direction.  We  even made an impromptu trip to the park, and he was able to cope with an abrupt "the baby's crying, gotta go right now" transition so well I was still in shock an hour later. 

Because a week ago? We wouldn't have even attempted the park. Or if we had, leaving would have taken 30 transition, and we'd have still had to carry  him out screaming, and he'd have been nonverbal for a couple of hours.

And this morning? He woke up with a smile and said "Good morning, Mommy."  No drama need apply.

It's been so deeply awful for so long I haven't been able to acknowledge the depths of the awfulness for fear I'd lose my resolve. It's been a non-stop pressure cooker of overwhelming stress as I've watched my poor Bear spiral out of control.  It feels like I've been clinging to the outside of a runaway train as it heads toward a cliff, and nothing I've tried has helped. Until now.

Now that it's been almost a week and it's getting better every day, my husband and I are starting to let our guard down.  Starting to think that this might actually be getting better.  That our family might get to come out of all-crisis-all-the-time mode and start to heal. 

And all thanks to a little blue bottle of liquid that cost less than 7 bucks.  

Whether Pigs Have Wings

Thursday, May 3, 2012

"The time has come," the Walrus said,
"to talk of many things:
of shoes, and ships, and sealing wax..."
and that my kid has Autism and Sensory Processing Disorder and Language Processing Disorder. 

And honestly? Would be so. much. happier. talking about shoes. Or even cabbages.

My brilliant little Bear is catching on. To, I dunno. Something.  He's noticing stuff and asking questions.  Questions with very difficult answers.

Like - after recovering enough to notice his Daddy and I discussing a meltdown - "Mommy, what's dis-reg-oo-ated?"

And a couple of weeks ago, when he finally noticed this:

It was in plain sight for ages. He just never noticed.  Until he did.  And one day about two weeks ago he presented it to me while I was making dinner and asked what it is.  Because while you're stressed out at the end of a long day with a knife in one hand and a dead chicken in the other is the perfect time to explain autism to a 4 year old, right?

The nice (?) thing is that I have sensory issues of my own.  So far, what we've said to explain things like him being the only one wearing headphones in a restaurant is that "our brains are a little bit different" and that can make some things like being in a noisy place uncomfortable for us.

I also have compulsive issues, so I've been able to genuinely understand where he's coming from when we're stuck in some awful loop, like when the bus is coming and he really needs to get his shoes on RIGHT. NOW. but he can't because the kitchen stools aren't lined up in a perfect diagonal and OMG MOMMY YOU CAN'T PUT THE LEFT SHOE ON FIRST.  Sometimes a simple "I understand that you need to finish this, can I help so we make the bus on time?" works wonders.  He may or may not let me help, but he calms down because he's no longer on the defensive.  And I can do it because I understand that awful "must do this crazy thing or the world will end" feeling. 

So. Back to that night in the kitchen.  I took a deep breath, thought fast and came up with this...

You know how sometimes things are a little harder for you? How you get sad and don't have your words? And how sometimes you need your headphones or to line up the chairs to feel better? That has a name.

Loooong pause. Because OMG OMG OMG don't make me say the name.  Please, for the love of pasta, don't make me say the name. Because I wasn't ready to say it to him. Not like that.

And he didn't make me say it.  He just said "ok" and wandered off to put the magnet back where he found it.

I know I got off lucky. And I know now that it's time to have this talk with him.

It was surprisingly easy to have that other "talk" with him. The one where you have to explain female anatomy? Yeah, piece of cake. He asked recently what girls have if they don't have penises (again, out of the blue and while I was making dinner).  I was too busy to overthink it, so I told him just as blandly as if he'd asked me if it tomorrow was a school day. And it was fine.

One of Bear's "things" is that a noun is not, apparently, happy all by itself.  That's why ketchup is "ketchup made out of tomatoes" but all rushed like one big word - ketchupmadeoutoftomatoes.

Why is why he will tell anyone who will listen that girls have a fachinathatbabiescomeoutof.

Which is to say... I need better material before he asks about autism again. Because he will. Because he's catching on, and I want to be ready next time he asks.

And because we just got this totally awesome shirt from ThinkGeek and I can't wait for him to wear it with pride.

If you had the autism talk with your child, please drop me a comment and either tell me how it went or link to your blog if you wrote about it.  I'm not interested in what a book by a clinician says I should say. I want to know what real moms said to real kids.