Saturday, October 26, 2013

I Love You, David!

Don't be embarrassed, David. It's just a g-string.
On Thursday night, two of my sisters and I took in a David Sedaris reading at our local symphony hall. It was a birthday present to my youngest sibling, but I have to admit it was a bit of a selfish gift.

See, I totally and completely love David Sedaris, and I contemplated taking a pair of panties with me to throw on stage in the middle of his reading. Of course he's gay, so I decided that would be somewhat useless. Briefly, I considered taking a pair of my husband's boxers and tossing them up on the stage, but since my husband was at home taking care of our children I figured that was a bit disingenuous, to say the least. I mean, I don't think Jim's read even one of David Sedaris' books.

Anyway, in the middle of laughing my ass off at one of David Sedaris' essays, my phone starts lighting up with texts. (Yes, I know, I'm one-of-those-parents who doesn't turn off the smart phone when I'm at an event. I have a child with special needs, I sneer when people glare at me.

Ok, no one has ever glared at me, but, you know, best to be prepared. It's hard to come up with something really good off-the-cuff like that. And my mother frowns upon my "the fuck you lookin' at?" response. Besides, it was on vibrate, people!)

At 8:30pm each night, Conor earns time on his iPhone. When he has earned enough tokens with good behavior, that is. My boy is mad, mad, I tell you, for texting, and recently he's discovered how to share the contacts on his phone with other people on his approved list. (He's not allowed to text just anybody. What are you, nuts?)

He's also figured out how to search the internet and find the contact information for his favorite stores. Then he inputs them into his Contact list. And next, bam, you've got the store's contact information in a text message.


Now, Hot Pots is a paint-your-own-pottery place that my son has started frequenting. To me, Hot Pots sounds vaguely like some second rate strip joint. Like--yeah, I'd love to dip my bread in her fondue kind of thing.

In reality, it's nothing like that, obvs. He IS totally cheating on his main paint-your-own-pottery squeeze, Amazing Glaze, but I guess he wouldn't be the first man to go looking for some Hot Pots on the side, you know?

I'm thrilled that Conor has learned to text. It's important that he continues to learn to communicate effectively as he gains more independence, and now he can socialize like many of his typical peers.

On a screen on his phone. Duh.

Teaching him to be appropriate with his texts has been a challenge, though, and as you can see from the message, it can be just another avenue to nag me or his dad about desired outings.

Wait… did I say nag? I meant perseverate.

So, we've got a whole 'nother protocol in place to address his perseverations, be it verbally or via text, which I'll share with you at another time. (God, you are so lucky. Make sure you check back on the daily to learn about the wild new perseveration protocol. It'll set your pants on fire.)

Suffice to say, I was thankful that ignoring the text was the appropriate response since I could tell the National Public Radio listener next to me was getting antsy about the glare of my iPhone screen. Besides, David Sedaris started telling stories about his sister, Amy, and the rest of his siblings going to London to celebrate Christmas with him and Hugh, and I simply couldn't stop laughing long enough to get the panties out of my pocket much less respond to Conor's texts.

Tuesday, October 08, 2013

The Worst Life Ever.

Last night, Conor became upset and almost-but-not-quite had a tantrum. Honestly, these almost-tantrums are just as stressful as real tantrums if only because of the anticipation of it. Especially before bedtime.

At bedtime, I'm all let's-get-this-over-with-it's-late-and-I'm-sick-of-this-shit kind of thing. The sooner we get started, the sooner we finish, sad to say.

Not to mention that whenever Conor gets worked up, I get a great big ball of sick in my stomach, and I'd put up with pretty much anything to make it go away. Even a tantrum.

Worked up, that's the clinical term.

I don't know why Conor was worked up last night. I told him that we weren't getting a rabbit named Dakota. Or a rabbit named Austin. Or any rabbit named anything at all, for that matter. Maybe that's why. (Where does he get these things? I blame Caillou, that little asshat.)

My husband, on the other hand, blocked Conor's attempts to start his Treasure Chest time two minutes early. Maybe that was it.

I know, I know, it's only two minutes, but with Conor, two minutes early becomes three minutes early becomes ten minutes early. You get the drift. No one pushes the boundaries like Conor. 8:30pm is 8:30pm. We've even had to pick a clock that we all agree on, rather than the random times I've set on the oven, the microwave, and the coffee maker. (The clock on the iPhone. Yup, that's the one.)

We wrangled Conor into bed, finally, after 35 minutes (45 minutes? More?) of stomping, screaming, crying, caterwauling, eloping, pacing and verbal assaults. Nothing demotable.

As my husband took on the unenviable job of getting Conor to sleep, I checked on Aidan, our typical 11 year old.  Flat on his belly, he lay on the twin bed in his room across the hall from Conor. His feet were where his head should've been as he propped last year's school yearbook in front of him. Aidan would've been asleep 30 minutes before (he gets up so early for the bus) but, really, who can sleep with all that carrying-on and such?

I glanced at the half-finished bowl of soggy Cheerios on his bureau, and I sighed.

"Time for bed," I said, flicking on his night light, his fan, his humidifier, his sound machine. Wearily he rose to visit the restroom one more time and returned to take a hit of melatonin before he settled himself under the covers. He still has a wicked case of sleep anxiety, my typical kid. We have quite the routine.

"I think I might have started Conor's upset," Aidan confessed to me as I turned out the light, his eyes closed. "I tried to ask him why he was screaming and jumping around in the shower. He said it was because he liked it and he was being appropriate, and I just went--pffffft. And shook my head."

"I don't know, Aidan," I replied. "Dad thinks it was trying to start Treasure Chest time too early. I think it was because I told him he couldn't have a bunny rabbit named Dakota. I'm not sure even Conor knows, honey. It's not your fault."

I gave him a hug, squeezing extra tight.

"If you want to talk to me about your feelings, Mom, you can," Aidan gently said to me. "It's ok." He patted me on the back.

"I just feel sad," I replied. "How about you? How do you feel?"

"Well," he said rubbing his eyes wearily and falling back on the pillows. "I don't mean to upset you or hurt your feelings, but sometimes I feel like I have the worst life ever."

What do you say to that? I'm sure some of it is pre-teen angst, but really? I have trouble coping with Conor's behavior, and I'm an adult. So I said the only thing I could think of.

"I know it's tough, sweetie. It's not easy to deal with. But think of all the good things you have in your life. Baseball. Good friends. A good school. Homework." I laughed.

"Homework," he groaned, pinching the bridge of his little button nose. "Torture."

******

One of my favorite songs--

Sometimes there's airplanes I can't jump out/ Sometimes there's bullshit that don't work now
We all got our stories but please tell me/What there is to complain about?
 

Wednesday, October 02, 2013

Meh.

I feel somewhat compelled to write a blog post since it's been so long since the last one. But I just have absolutely nothing to share. Maybe I'm all written out, or maybe I'm all autismed out, or maybe I'm just tired, but for the last few months or so I've felt like...

Bleh. Just... bleh. Which is slightly worse than meh but not quite as bad as blech.

Maybe it's because we started working with a new behaviorist a few months ago (ok, February but what's it to you?), and it's just been so much work. Meetings and observations and social stories and data collection and training and additional protocols and managing his behavior and and and... God, it's just so much.

Or maybe I'm just a lazy-ass good-for-nothing bon-bon eating wino stay-at-home mom who'd rather read Sarah Vowell's Assassination Vacation than do something productive like writing a blog that nobody reads. (By the way, Sarah Vowell rocks.)

Wait, give me a minute, my butler's serving me a cup of coffee.


Ok, that's Gerard Butler, not a real butler, but me-ow.

Where was I?

Oh, right, my general sense of malaise. I go through these spurts every once in awhile. (I said spurts, tee hee. I'm sorry, but that's a really funny word.) It usually happens when I feel completely and utterly overwhelmed by my son's disorder.

It's just... with Conor, with his autism, there are so many things big and small to work on and the list seems interminable.

For example, recently, our behaviorist gave us a checklist of social skills and asked us to rate where Conor stood on them--mastered (does it all the time without prompts), sometimes (needs prompting), and never. The number of 'never' items hit me like a pound of bricks. (See? See how I avoided the cliché 'ton of bricks'? I'm really clever like that, and besides, a pound of bricks still really hurts.)

I don't know why, I shouldn't be surprised as impaired social interaction is at the heart of the disorder. But still...

And then, I realized that some items I had marked 'mastered' he clearly hadn't mastered.

Like, I had noted that he had mastered the social art of saying "excuse me" when he bumped into someone. In the past, I've seen him say it appropriately and consistently, and, in my mind, I checked it off. So I checked it off the behaviorist's list. Then, over the course of the next 7 days, I watched Conor bump into--or cut in front of--numerous people, and he did not say "excuse me" once.

Now, you may find yourself thinking--no big deal, why is that a big deal? Such a meaningless nicety when we've got more challenging things to work on.

Well, I'll tell ya, people are remarkably offended when Conor runs over bumps into them in his haste to get to wherever it is he's going.

Ok, ok, Kanye, relax, he has autism.
Conor, next time, say "excuse me, Mr. West."
See, as one mom remarked to me many, many years ago, Conor doesn't even look autistic! (I have no idea what that means, but that's what she said.)

So people don't know he has a disability when he's desperate to get to the coolest gingerbread kit he can find at Target.

All they see is an auburn-haired, husky 14 year-old with big blue eyes running them over on the way to the Seasonal Rack of Kitsch.

And some of the time, they've got somethin' to say about it. (Not that I blame them. He's a big kid.)

On a rare occasion, I'm all "fuck you, Kanye, he has a disability, why don't you go buy Kim some new clothes already," but mostly I'm all "I'msorryhehasautismandhastroublewithboundariesConorsayexcusemetoMr.West" as I rush by in pursuit of my teen.

And so we'll work on it. We'll work on it, and work on it, and work on it a little more. We'll go on to other things on the list, then we'll come back to it, and work on it a little more, until he has it mastered with 80% accuracy. (Sorry, special ed joke.) And then on to the next item on the list. And so on and so on and so on.

Meh.