The Importance of Listening to Music Quite Loudly

Last night I heard Conor in the shower, singing this song.



Music plays an integral role in Conor's inner life but I'm unsure of the why or the how.  He's no musical savant, my son. He's not picking out melodies on the woefully out-of-tune upright piano we have gathering dust in the living room. (The one I learned on and can barely play after all these years of neglect.)

The fact is, the piano is merely a stand for his birdhouses and decorative plates.

You would not believe the number of decorative
plates he's done. But that's for a different post.

But yes, music is important to him. He listens--and has listened--to music as frequently (and as loudly) as possible.

In the car.  On his iTouch.  On his portable CD player. (Yes, he's the only American who still has one.)  On his computer.  On his iPad.  On the boom box he has in his old classroom on the third floor of our house.  (Boom box, that gives me a chuckle.)  Conor blares music while he jumps on the indoor mini-trampoline. (One of those jog-o-line contraptions.)

And I think he's the only person on the planet besides my mom who still buys CD-ROMs.

He'll sit in our car, as we idle in front of our home, asking to listen to the song on the radio until it ends.  Then he'll ask to Shazam it with one of our iPhones.  Then he'll go on his computer (only on Treasure Chest time) and preview the song on the iTunes Store. Then he'll ask to download it. (He's allowed to download only on Friday nights and Monday nights.  It was getting to be a big problem. Hello, my name is Conor and I'm a downloading addict.)

Then he'll download the video on the next opportunity.

He'll spend hours reviewing the songs the iTunes store recommends based on his past purchases. This means he'll spend weeks downloading country rock and then suddenly switch back over to his girl, Rihanna. (Now that Beyonce's had a baby, he's moved on. You're old news, girlfriend, sorry.)

Music calms Conor's savage beast, at least some of the time.  It excites him.  It mesmerizes him. It's his leisure activity of choice. His taste is wildly eclectic.  Country rock, southern rock, R&B, some alternative, hip hop, a soupçon of classical (but not really), pop, pop and more pop. No techno, at least, not yet.

The rhyme or reason escapes me. How do you hop from Cinderella to Rihanna to the Doobie Brothers, back over to Carrie Underwood over to Madonna, on to Chely Wright to Flo Rida and David Guetta, only to turn around and listen to the Baby Bach CD bought when he was, well, just a baby?

Is it the lyrics?  The beat?  The length of the song? I wonder, what tickles that brain? Years ago, he used to play the same 10 or 20 second section of whatever song caught his fancy over and over and over and over again.

I don't know what his musical taste and his affinity for music might tell me, but one thing is for sure.  Whatever music Conor listens to, you can be sure that he's listening to it quite loudly.  Amazingly loud.  Frighteningly loud. So loud that you can hear it emanating from his oversized headphones tucked tightly against his ears.

Yes, yes, I know, he'll be deaf by the time he's twenty.  Lordy, we've fought that fight a thousand times.  He won. (That tells you something about my parenting, I bet.)  It's just... it seems like such a sensory thing for him, the complete immersion into the music. The exclusion of everything else in the world.

To me, it echoes how he used to swim underwater in the pool for hours, coming up for air like a little dolphin and diving back down.  Just complete sensory relief, it seems. It's so loud, it's quiet. Nothing but the song, and the music, and the musician, and his mind.

I have to admit, when things are bad with Conor, I do the same thing.  I sit in front of our house, trying to will myself to go back in from my trip to the bus stop or the grocery store, and I listen to the music quite loudly.

When Conor was 8 or 9 (how the years blur as they go by), he grabbed hold of this John Mayer song and would not let it go.  Unfortunately for his tutor, it wasn't the acoustic version, and he would play it again and again and again and again quite loudly during his scheduled breaks. I don't think she was quite the same after that.

Listen to it at a really high volume.  Conor would like that.

NEON! NEON! NEON! NE-ON! WHO KNOWS HOW LONG HOW LONG HOW LONG SHE CAN GO BEFORE SHE BURNS AWAY...

I've been to two John Mayer concerts.  (Three?  Maybe three?)  Awesome.  Captivating. Amazing. Inspiring.  You should go if you get the chance.

My Son, The Mobster

I think Conor is becoming a mobster. Honestly, I think he tried to extort payment out of me yesterday.

Give me my payment and no one gets hurt, see?

Give me more money, lady, or I’ll have a tantrum like nobody’s business. Just watch me.

See, a few months back, we figured out that Conor figured out that he could have one tantrum a week and still earn his treasured community outing. 

He’s crafty like that. Sly. You can’t put anything past this guy. 

So, we added a little monetary incentive to Conor’s behavioral protocol. If he has an entire week (or weekend) without ANY tantrums, he earns $3 in addition to his outing. 

All-in-all, if Conor has 7 consecutive days with NO tantrum, he earns an extra $6. Not bad, you know. Works great, most of the time. It’s only $3, but you can buy a hell of a lot of pencils for three coin. 

I bet you thought I was kidding about the pencils.

So now, we wanted to reward him for 1) NOT having a tantrum AND 2) doing his Behavioral Relaxation Techniques (BRTs) to help him calm down. His dad and I, we figure, this is easy. We got this. Obviously, he’s motivated by money.

(Like father, like son, they say. Maybe Conor can get a job on Wall Street. I bet he'd understand derivatives more than that JPMorgan fellow.)

Now, every time Conor gets upset but engages in his BRTs to help calm himself, he earns a quarter. He has to stay calm for 30 minutes after doing the BRT to earn the extra quarter. (And, of course, no tantrum.)

His behaviorist approved the plan, and we implemented it in school. I didn’t really think much of it at home. He didn’t seem to really want the quarter when he got it at school. So I figured, why bother?

(This, by the way, is a no-no on my part. Follow the protocol, Alisa. Follow the protocol and nobody gets hurt.)

But yesterday? Yesterday, it was like he walked into my bodega on the corner of 34th and 9th Avenue, pointed a pistol at my face, and said, “Give me more money, honey, or I’ll have a tantrum like you’ve never seen before.”

Hand it over, easy-like.

It all went down like this, see?

I drop Aidan off at his playdate. I drive home, open up the rickety back yard gate, and 

BAM!

I walk right into the shakedown on the basketball court. There’s Paisely (Conor's therapist) and my husband trying to get Conor to calm down. They’re doing everything they can to re-direct him, get him interested in an activity, and to chill the hell out. Nothing’s working.

I tell Conor to let my husband go inside. (That’s the first step, releasing hostages.) I keep Paisely on as muscle and we start to negotiate. (In all honesty, when Conor’s upset, for some reason he picks on Jim more than me. So sometimes it’s easier when I talk to him. When I have back-up. Only when I have back-up.)

"Take five deep breaths, Conor," I say. We do it along together. Let’s just move inside, easy-like, and try to pick an activity. Let’s Cook-Something-Fun!

You like cooking! (Fake smile.)

He’s not buying it. Slowly, slowly, I back-up and coax him inside. No sudden moves. Real calm. Real easy-like. Hands up, palms out. There, finally, he’s on the couch. Paisley hands him his headphones. He listens to music for 30 minutes, wiping the tears from his eyes. The red fades from his freckled cheeks.

“Mom?” he says to me. “When will Conor get his quarter?”

“What?” I reply. “Your quarter?” Oh, damn, the protocol.

“Paisley, do you think he really engaged in the BRTs?” I asked. I wasn't entirely sure.

“I think so,” she answered. “He did the deep breathing along with you and he calmed down. I think it counts.” 

I run and get a quarter out of the change jar. “Here you go. Good job staying on Level 3, doing your BRTs, and earning your quarter.”

“Mom?” Conor continued. “When will Conor earn another quarter?”

OMG, seriously? 

MORE money, you’re looking for MORE MONEY? I can see it, too, the little squirrels running around inside his brain.  He's thinking--how many quarters can I earn over the next week to make up for the $3 I'd lose if I had this tantrum?

“The next time you do your BRTs when you’re upset, Conor, you’ll earn a quarter,” replied Paisley.

“WANT A COIN THAT’S 45 CENTS!!!!!!!!!” Conor vehemently exclaimed.

Oh, so that confirms it. That’s the game. There it is. He wants more money. Protection money. Buy-me-off money. No way. I’m standing up to my little Tony Soprano.

“No,” I replied, looking right in his eyes and pointing at him. “It’s a quarter, Conor. That’s IT.”

“How many quarters make $97?” he asked my husband later, when he was calmer.

“388,” my husband replied.

“CONOR WANTS 388 QUARTERS TO MAKE $97!” exclaimed Conor.

Let's see, does that mean we have to tolerate 388 more upsets (but no tantrum) to earn enough quarters to, oh, I don't know, buy the calculator we want for $97?  Hmmm?

Wait a minute... if I can get 388 days of no tantrums, only upsets, for 97 bucks?  That's, like, a whole year. Hell yeah, I'll take that deal.

Shake on it, mobster.

Just Lie To Me

Ok ladies-of-a-certain-age. (You know who you are.)

If you're out and about and just minding your own business, you might see a cute 13 year-old boy who looks as Irish as Paddy's pig. Maybe he's on a walk with his dad, maybe he's visiting your neighbor, maybe he's just touring around the mall with his 1:1 aid.  Whatever, you run into him.

Here, this is what he looks like, so you know.

And if this blue-eyed, freckled-face young teenager with the little button nose asks you, articulately and without prompting (or even with prompting, for St. Patrick's sake)--

How old are you?

Please answer the question.

Stop scolding him that "you don't ask a lady her age, young man!" Please don't refuse to answer him because of your own vanity.

This is your chance, maybe your one-and-only chance, 

to be 29 again. And it costs you nothing.  

Just lie to him. A small fib.  Just tell him what he wants to hear.  He doesn't want to judge you. He doesn't care if you're eligible for Medicare.  He doesn't care if you're 42 years-young.  He doesn't care.  I don't care.  His 1:1 doesn't care.  Your neighbor sure as hell doesn't care.

So go ahead, shave ten years off your last birthday.  He's not going to ask for your birth certificate or to look at your drivers license.  He's not the age police.  (Although, quite frankly, if you give too low a number, he might just call you on it.  Don't go crazy or anything is all I'm saying.)

All he wants to do is ask you a simple question, and get a simple answer in return.  I know it's a plain, almost comic, attempt at being social.

But help a guy out here.

For God's sake, just lie to him!

After all, I'm sure you've lied about your age to your doorman, your daughter's new boyfriend, your florist, the dog's groomer and the pet-sitter.  What's one more?

The Water Is Cold But Soup Is Hot

Today it felt like summertime in Baltimore.  Our pool is open, so I asked Conor if he wanted to swim tonight.  He said yes, jumped into the clear, blue water, and then quickly leapt out.

Guess it's still a wee bit chilly in there.  So he reclined on the hard-but-warm cement to take the chill out of his bones.

"Want Mommy to swim with Conor!" he asked.

"Nah, it's too chilly for me, C," I replied.  I don't get in the pool until August and only then if it's over 100 degrees outside.  I hate the water as much as Conor loves it.

"Want to make Kalihari soup!" he declared emphatically, staring at me.

"Who's Kalihari?"

"A girl at school," he replied in a quiet voice.

"So do you want to talk to me about being mad that I won't get into the pool," I said, "or do you want to keep yelling about Kalihari?"

"Want to make Kalihari soup!" he repeated, this time a little more vehemently.

Yeah, that's what I figured.

Just Breathe (Deux)

It's still healing.

This past Thursday, I paid $60 plus a tip to a heavily tattooed brother of a friend to carve the word “breathe” permanently into my right wrist. This is my second tattoo. 

(You know what this means, right? It means I can’t ever have another corporate job.  Or, at least a corporate job wearing short sleeves. This thought is remarkably freeing. I'm a writer now, I put words on the paper and sometimes someone else actually reads them.)

I chose the word “breathe” in an area I can glance at quickly because, you know, I have a tendency to, um, FREAK OUT.

I figured a little reminder to chill out was in order.  Plus, it’s really pretty, like a permanent bracelet.

As I sat in my green camping chair watching Aidan’s baseball game this Saturday, a close friend of mine commented on my new body art.

“I’m a little concerned about what my Mom’s reaction is going to be,” I confided in her.

“You’re 42 years old and you’re still worrying about your mom’s approval?” she laughed.  “C’mon!”

Well, it’s not that I want my mom’s approval necessarily, I suppose.  If I was that worried about her approval, I wouldn’t have married a divorced man eleven years my senior who was—snap—my boss once upon a time. (Although, to be fair, she loves Jim.  How could you not? Everybody loves Jim.  Except his ex-wife, I guess.)

No, she doesn’t have to like it, but it’s not some rebellion thing. I just don’t want a stern talking to. I don’t want her to give me a disapproving look with her arms crossed over her chest.  Worst yet, oh my God, the silent treatment.

Thankfully, my mom's not a yeller.

My friend’s question makes me wonder, though.  Does Conor want my approval?  Does he even care?

My typical kid, if I tell him I’m disappointed, that his behavior was inappropriate or embarrassing, it’s like I’ve whipped the poor kid with a piece of rusty chain-link fence. He wants my approval, he craves it like an addict craves his next high.

But Conor?  Would he have these raging tantrums if he gave a hoot about what I thought?

I don’t think Conor wants my approval.  I’m not sure he even comprehends what that means.  I just don’t know.

He does want me to be happy with him. (Is that the same thing?) He reacts quite strongly if I even intimate that I’m angry with him.  (But not reacting in a good way, oh no.) If I pull away from his incessant neck-grabbing, I swear I see something in his eyes.  But I don’t know what it is. He can’t say.

I know he hates the silent treatment.  He doesn’t like the space I put between us after one of his bursts.  I know I shouldn’t, he has a disability after all.  He may have some control over his behavior but it’s not his fault.  But I can’t help myself. I learned a long time ago that I need a measure of emotional distance, and even physical distance at times.  For my own mental well-being.

But my approval (or lack of it) is not a motivating force.  Or a deterrent, for that matter.  It makes no matter.  He’s motivated by computers and electronics and iPads and aquiring songs and community outings to buy stuff for him. 

It’s always about what he gets. It’s not about what I think or how I feel about it.  It’s about what he wants, what he desires, what he sees. Something concrete, something tangible.  Like a calculator.

He does what he wants, not what he thinks I want.  He’s not being selfish. He just doesn’t even think about what I might want.  It doesn’t occur to him to think of it. I'm not sure he can.

Typical kids, they all want some measure of approval from their parents.  Conor--he doesn't want me to be angry with him, but my approval seems to not matter.

Most of the time, my relationship with Conor feels like a one-way street.  A one-way street (his way, of course) with some dead ends and maybe a couple of cul-de-sacs.  Once in awhile we run into a two-way street, but it's inconsistent. Maybe one day we'll get there, to a more equitable two-way street. But I'm not holding my breath.

As for the tattoo, I think everything will be ok. Hell, between the four Rock girls, we have three tattoos, a nose ring, and a (now-removed) eyebrow ring. We've had purple, somewhat shaved hair, and at least one of us (I’m not saying who) lived with their boyfriend before marriage.

Ok, it was Rachel. She was the one who also shaved a portion of her hair in college, dyed it purple, and had the eyebrow ring.  Leah has a tattoo and a nose ring. Maybe I’m just trying to catch up to my little sisters. I'm just a little late to the party, that's all.

Unconditional Love Is The Cure

Recently I’ve fallen into a big funk.  A big funk laced with some melancholy and served with a hard chocolate shell of bittersweet.

Usually, I blame this kind of thing on my screwed-up gut or the peri-menopausal wackapoopoo my body seems to be throwing off these days. Hell, my poodle looks at me funny some days and I think I’m going to cry. (I feel so sorry for my husband.)

This time, however, I know exactly what set me off. And it’s not the gut-brain connection.

See, someone I know (but not so very well) posted one of those Facebook “postcards” on her page.  If you’re on Facebook, you know what I’m talking about.  The postcard said--

Her comment on the postcard read something like this--"wouldn't this be nice if it were true?" Yes, it would. It certainly would.

It sounds stupid of me, I know, but this really threw me for quite the emotional loop.  (I love butchering a good cliché.  It feels so subversive.)

One of my closest friends, who also has a child with autism, admonishes me every time I tell her about reading something like this.  Just don’t read that stuff, Alisa, she tells me. We’re not reading that stuff any more, remember?

I know, I know, but it’s RIGHT THERE.  On the News Feed. 

Look, I don't know who put together this "postcard."  (Is it a meme?  I'm not sure.)  These things travel around the Internet and Twitter and Facebook like STDs after a fraternity party.

But it just made me feel morose.  Gloomy.  Sullen.  Surly.

See, if unconditional love cured autism, my kid would have been cured so long ago.  No one loves my kid more than I do.  

NOBODY.  

(Ok, I’ll admit that maybe my husband loves Conor as much as I do.  But not more, no sir.)

I wonder? Do people with cancer have to read Facebook postcards that say—

The cure for breast cancer is unconditional love

Do men with erectile dysfunction have to read pillows that state—

The cure for ED is unconditional love

Is there a needlepoint that points out that—

The cure for vaginitis is unconditional love

No, no they don’t.

Maybe whoever came up with this sentiment about unconditional love and autism should bottle up that unconditional love and sell it on eBay.  I bet they’d make gobs and gobs of money.  ‘Cause whatever unconditional love I got ain’t really working over here.

I’m gonna go take more fish oil capsules.  Maybe that’ll make me feel better.

The Cup Runneth Over

“Go ask Mommy,” I heard my husband say to Conor from the boys’ bathroom. “She’s in Aidan’s room.”

Uh oh, I thought.  What now? Please don’t ask me if you can have the $96 calculator for Christmas again.  It’s only May.

“Mom?” Conor asked liltingly as he comes through the door.  Jim followed close on his heels.

“Yes, Conor,” I replied, barely looking up from my laptop.  I usually work on my blog while Aidan reads a book before bed.  He likes the company.

“Mom?  What’s this?” he asked inquisitively.  

I don't know, what’s that he’s got in his hand? 

He came closer.

“That’s Aidan’s cup for baseball,” I replied, trying hard not to giggle at the black and silver protective cup in Conor's hand.  My husband has forbade me from giggling about the whole cup thing. Protecting your jewels must be no laughing matter, I suppose.

“He wears it to protect his penis,” I finished.

Conor burst into laughter.  I swear, we rarely hear him laugh so naturally like that. He turned to look at his dad with a smile in his eyes and more giggling.  He threw the cup on Aidan’s bed and left the room, still giggling.

I think I just got punk'd by my autistic kid.

“It’s really for his testicles, hon,” my husband winked at me.

I swear, I don’t know how you guys walk around with those things.

One F-Bomb, Some Sexual Innuendo, And Getting Off The Grappling Hook

Yesterday, Conor had a 30 minute tantrum at school.  Thankfully, this time, our case manager didn’t call us. He usually does. I'm sure there are legal guidelines about when and how they have to call parents. (If I were a good parent, I'd know what those guidelines are, I suppose.)  Maybe it's because the tantrum was just before pick-up.  I don't know, I get tired of thinking about these things. Whatever, he had a burst yesterday.

This time, the behavior support staff just informed my husband when he picked Conor up at school. Jim texted me when they got to the car.  (But not while he was driving.  No, that would be admitting to an illegal activity here in Maryland and we certainly do not do that.  Admitting, I mean.)

Here, you can read our exchange--

Always a comedian, my husband.

I was on the tortuous spin bike we have in my office when I got the text.  I just pedaled faster, and furiously.  (It's quite motivating, evidently.) But not too fast that I couldn't respond appropriately. I'm not an exercise enthusiast, after all.

You know, I have spent countless hours wracking my pitiful little brain about why Conor developed these bad behaviors.  Honestly, I know I'm not a perfect parent, but I don't know what I did so wrong to deserve this.

Why does MY kid have to be the one that can't behave?  And in such SPECTACULAR fashion. WHY? WHY?

Yes, I'm pouting.

Oh, relax, I'm not going to bore you with my regrets and my pity party. God knows, I bore my husband enough with both of them. (You can read all about them here, anyway.)

This past weekend, the New York Times Magazine featured an article titled, "When Is A Problem Child Truly Dangerous?" Its subtitle is Can You Call A 9-Year-Old A Psychopath?

Don't worry, don't worry, I'm not going to be all "my son is a psychopath" on you. No, it's bountifully clear that he has autism. But Dan Waschbusch, a researcher at Florida International University featured in the article, believes that "psychopathy, like autism, is a distinct neurological condition — one that can be identified in children as young as 5."

(Of course, this theory is highly controversial. But remember when everyone thought autism was caused by "refrigerator mothers"? Turns out... neurological condition. Imagine that.)

Ok, ok, I know I'm dragging it along here. What I'm trying to articulate is that this article made me stop and think... what if it wasn't anything I did wrong after all?

What if it's just... what if it's just that his brain is somewhat hard-wired this way? What if he has such difficult behavior because his brain just tells him that it's the right course of action to take? That his "fight-or-flight" is permanently stuck on "fight". That it sometimes takes too much effort to re-route his thinking from "tantrum" to a more socially acceptable action?

That's hard enough to grapple with, I suppose. Because while it takes me off the hook emotionally, it also limits our options to do a tremendous amount to change it.

Geesh, you can't win for trying. I don't know. I don't know the answer. I don't have any answers today. He didn't want to share the basketball.  That's all I know.

We need an electrician to go in and re-wire his brain. There, it's that simple.  Maybe Ben Carson can go in there, and move a few things around.  Hey, crazier things have happened.

Hey, Ben, help a girl out, will ya?

That's why my next reading assignment is "Connectome: How The Brain's Wiring Makes Us Who We Are" by Sebastian Seung.  I bought it four months ago, but the science is challenging my feeble writer-brain. It sounded so... accessible when he was talking about it with Terry Gross on Fresh Air.  Maybe I can find the answers in there...

Here's a synopsis from Amazon.com:  Sebastian Seung, a dynamic professor at MIT, is on a quest to discover the biological basis of identity. He believes it lies in the pattern of connections between the brain's neurons, which change slowly over time as we learn and grow. The connectome, as it s called, is where our genetic inheritance intersects with our life experience. It s where nature meets nurture. Seung introduces us to the dedicated researchers who are mapping the brain s connections, neuron by neuron, synapse by synapse. It is a monumental undertaking the scientific equivalent of climbing Mount Everest but if they succeed, it could reveal the basis of personality, intelligence, memory, and perhaps even mental disorders. Many scientists speculate that people with anorexia, autism, and schizophrenia are "wired differently," but nobody knows for sure. 

How 'Bout Dem O's, Hon?

My father raised me as a Baltimore Oriole fan and thus, I have remained one.  If you’ve ever been to an O’s game, you know that in the 7^th inning stretch, John Denver’s “Thank God I’m A Country Boy” blares.  Everyone stands up, and like a bunch of awkward, drunk puppets, we all slap one knee while lifting that same leg up and down to the beat of Denver’s song.

I don’t know why the team adopted this little ditty as the 7^th inning stretch rally song.  If Alabama is the Deep South, Maryland’s the first step into the shallow end of the southern pool. We’re Southern Lite, I suppose. People commute daily from Pennsylvania to Baltimore, for Pete’s sake. Cal Ripken Jr. used to hit homers that practically made it to the northern border.

But, this is our tradition and I join in with everyone else in the stadium.  What the hell, it’s fun, especially after two or six microbrews and a couple of Boog Powell’s pit beef sandwiches. Laced, of course, with a very hot, nose clearing, wet horseradish sauce. (Boog Powell ranks third in Oriole all-time home run hitters, with his best year in 1964. Now he owns a pit beef place at the Yard. Just FYI.)
Ok, ok, it is ENTIRELY possible that I’m the only person doing this drunk puppet dance. By the 7^th inning, it’s not entirely clear. I guess you’ll have to go to a game to see for yourself.

In any case, when Conor started stomping his foot and slapping his knee and screaming at the top of his lungs during our outing to Panera Bread yesterday, I insanely thought to myself, “Thank God I’m A Country Boy.”  He was, I gather, extremely upset that they didn’t have his first choice of bagel (an “everything” bagel) or his second (sesame) or his third (poppy).

Yesterday was Mother’s Day (as if you didn't know), and I suppose every mother in Bawlmer needed her everythink bagel, hon. I don’t know, but there wasn’t a bagel in the joint. Not one Conor could stomach, anyhow. (Who turns down a cinnamon crunch bagel, I ask you?  Who?  That’s just plain craziness.)

Yoose all gimme dat everythink bagel, hon, and no one gets hoit, s'aw-ite?

After a couple of these stomping, knee-slapping, caterwhauling “dances”, Conor’s behavioral therapist, Paisley, and I fled the scene like armed robbers who just realized an FBI agent was ahead of them in the bank line.  Fled, I tell you.  Like the law was right on our tails.  (Book me, Danno, I need a vacation.)

We got to the sanctuary of the car and spent 15 minutes trying to figure out what would be an acceptable option—

“CONOR WANTS MASHED POTATOES FOR LUNCH!" (you want to go home for lunch, C?)  

"CONOR WANTS TO GO TO CHIK-FIL-A FOR LUNCH!" (Closed on Sunday, dammit.) 

"CONOR WANTS TO GO TO AUNTIE ANNIE'S FOR LUNCH!" (Ok, want to go there? Please say no, please say no. The mall has lots of people.)

“CONOR WANTS MASHED POTATOES FOR LUNCH!" (you want to go home for lunch, C? You can have rice cups!) 

Finally, we drive to a nearby small, locally-owned bagel shop.  They had gobs of “everything” bagels.  We know this because I sit in the car with Conor while Paisley does some reconnaissance.  Hey, I’m not getting out of this car if there’s no everything bagel, you feeling me?

They have the bagels.  They have lemonade.  He tearfully orders. We sit and eat.  We feel better.  We ask for ice cream.

&*($*&%.  

Paisley and I get on our phones to see if the ice cream place is open.  Hey, I’m not doing this “we don’t have what your kid wants” thing twice—IN PUBLIC. No. Way.

They’re open. We drive over. Conor orders--"vanilla ice cream with rainbow sprinkles, please."  Paisley gets pistachio.  I dream of a glass of wine.  We sit.  We eat.  We talk. Hey, nothing wrong here,  nothing to see, let's all just be calm and breathe.  Deeply.

As I handed Paisley her money yesterday afternoon, I looked her in the eye and told her, “You know, you earned every penny of this today.”

“Thanks,” she said.  “I’m glad he didn’t have a tantrum.”

Yeah.  Thank God it was only Thank God I’m A Country Boy.

See?  John Denver's practically doing the drunk puppet dance himself.  You can't help yourself.

Just Like My 3rd Child

It's somebody's 2nd birthday!
(BTW, Conor put the hat on him.)

My husband has dubbed Linus, our 3-year old standard poodle, my third child.  I often chafe at this, but, truth be told, the moniker fits. 

I dote on Linus, hug him, love him, fret over him, take him to get regular haircuts, try vainly to train him but get only a resemblance of obedience (if he's in the mood), wonder at various times why I ever got him, and then miss him like crazy when he's gone off to the kennel.

Yeah, just another one of my kids.

Recently, Linus became quite sick with some sort of stomach bug.  How do I put this delicately?  It involved liquid coming out of both ends of him. Hmmm, that wasn't too delicate.

Liquid poo is not pretty and never delicate, although it IS hard to pick up with my kelly green 100% biodegradable ASTM D6400 standard doggie-poop-bag.

So I took him to the vet. Bada-boom, bada-bing, $307 later, I still have few answers.  However, I do have some expensive new dog food, probiotics, and, hopefully, some medication to soothe the savage stomach beasties.

As I sat there listening to the veterinarian run down various theories about the causes of liquid poo and what tests to run (cha-ching, cha-ching went the cash register in my head), it dawned on me that dealing with Linus' medical issues aren't unlike dealing with Conor's.

After all, despite my son's prolific verbal skills, he still doesn't communicate well so he can't always tell us what's going on. It’s a guessing game, just like the veterinarian was theorizing about what was wrong with Linus.  Linus can't tell us that he ate a 10-day-old piece of buffalo chicken wing off the corner of Roland Avenue and Northern Parkway when I wasn't looking, and sometimes Conor can't tell us exactly what's going on with him either.

Even if Conor answers "Yes" to something as basic as "Does it hurt?" you can't always trust that the answer is correct.

Does your toe hurt, Conor? Yes!

Does your arm hurt, Conor? Yes!

Does your leg hurt, Conor? Yes!

Does your hair hurt, Conor? Yes!

Do you want a million dollars, Conor? Yes! 

(Well, really, who wouldn't, I suppose. Stupid question.)

Point to where it hurts, Conor. Here! (He points at the window.) 

Today my husband took Conor to the pediatrician to try to figure out why he's taking an hour-long nap every day. (Conor, not my husband. Although, I have to say, you can often find Jim snoozing right next to Conor on the couch. He’s so snuggly. Conor, not my husband.) In the evenings, after the naps, we would poke Conor with a hot cattle prod to keep him awake until 9:15pm so he would go to bed and sleep through the night without a problem.

He'd pop out of bed at 6:20am (of course, always does), then go into our bed and ask to take a nap.

For the kid who used to take medication just to make him sleep, this is extremely odd behavior. Jim and I noticed it during our trip to Florida on Spring Break, but we assumed Conor was over-stimulated from being in a new place and most likely not sleeping well on the pull-out couch in the living room of our hotel suite. (Those things are torture, but I’m not past putting my kids on them. They’re more flexible. The kids, not the couch.)

Well, the only nice thing I have to say about Linus’ liquid poo is that it is convincingly biological. Something concrete is going on. But something vague like Conor’s uncharacteristic sleepiness?

Its been a month and a half now, and I’ve struggled to get a doc to take us seriously. Maybe they secretly believe that we're happy he's napping every day, I don’t know. I totally would be thrilled, if waking him up didn't result in a cranky, irritable, agitated kid out for revenge.

Yeah, wake me up, will you?  This'll show you.

I did my best. I really did.  I waited a good two weeks before I called the pediatrician. (So uncharacteristic of me. Usually I would have freaked out much quicker.) I figured maybe Conor was just exhausted from the change in routine.

Then I broke down and called. At first the pediatrician told us to "Give it a few days, let's wait and see". (Those with children on the spectrum will appreciate the "wait and see" attitude. They must have a class in medical school where they teach you how to say "Wait and See." Is he vomiting, have diarrhea, fever, rash? Then stop bothering me, neurotic mommy, and Let’s wait and see.)

So we waited (some more). And he was good for a couple days. And then he wasn’t again.

So, the next week, at a routinely scheduled appointment, the neurologist suggested we look at medication, consider sleep apnea, and recommended we check his thyroid.

“No, no,” I said. “I don’t think it’s the medication. I track that, and I would have noticed. He would have been sleepy right away, right? Not four weeks later.”

See? I keep a journal. We’ve done this since he was little. It’s one of the only ways to keep track of everything that’s going wrong on with your kid after he regresses.

See? Ok, not great notes, but notes.
You can see that his sleep is erratic during this period.

Then she suggested sleep apnea. “Does he snore a lot?” she queried.

My husband, who had spent Christmas vacation sharing a bed with Conor, assured her emphatically that he did not snore. (Conor, not my husband.)

So there we were. Sitting in our uncomfortable plastic exam room chairs. Waiting. It’s a good thing we didn’t hold our breath, though. She wouldn't give us the forms for a blood draw. We'd have to go to the pediatrician for that.

So now we have to pay ANOTHER doctor bill, take him out of his routine for ANOTHER doctor's visit, and hope that the pediatrician takes us seriously enough to actually investigate infectious reasons for his unusual fatigue.

Now, I'm not hoping my kid has an infectious disease. Quite frankly, I hope he doesn't, although sometimes it's nice to have something you can actually treat. (I suppose the next step would be a sleep apnea test. Which is more appealing than messing with his medication, I have to say. Meh.)

Maybe he'll be diagnosed with a beastie that makes him sleepy and then we'd give him a nice round of antibiotics, and then he'd sleep from 9:15pm until 6:20am.  He'd wake up, sail through the day with nary a problem or behavior, high-five his dad, try to grab my neck, eat his sweet potato, and go to bed again with a smile on his face.

Hey, it could happen.

Chillaxin'

Conor relaxes doing two of his favorite things-- 

listening to music and adding numbers on the calculator.

I don't even think he's knows I'm here!

Get The Purse, Conor. No, The Other One.

My husband is a generous man.  As a matter of fact, that’s one reason why I married him.  That, and he has a really cute ass.

See?  Cute!

So, birthdays and holidays (even the Hallmark-made-up-holidays) are a big deal in our house.  He likes to take the boys out on a jaunt to pick out gifts for somebody’s birthday or whatever holiday is coming up so that they learn the same spirit of generosity.

We’re rapidly approaching the holiest grail of honouring-women-who-have-reproduced-holy-day, Mother’s Day. Let’s take a bow.  All hail the mother!

Frankly, I could care less about Mother’s Day.  Every day is Mother’s Day around here (these kids just don’t take a hint and leave me alone already) and I feel the love all the time. 

But it’s a good excuse for my husband to take Conor into the community and help him learn the social parameters of gift giving and to work on learning about a budget.

That’s the idea anyway.

Conor, of course, had his own idea.  

See, Conor (as I might have mentioned once or twice) is obsessed with calculators.  After Jim broached the topic of Mother’s Day gift-buying, Conor requested his iPad on his precious, hard-earned Treasure Chest time.  He hid under a blanket.

Usually if he goes off by himself with the iPad, he’s looking at pictures of Beyonce or trying to surreptitiously download entire albums of songs.  Usually of songs by Beyonce.

Not this time.  This time, he was on Amazon.com, and he had hit the motherload.

“Dad?” I overheard him ask, “can Conor buy this calculator for Mommy for Mother’s Day?” He tap-tap-tapped on the screen.

Now, this wasn’t just ANY calculator.  Oh no.  This was an accountant calculator.  A calculator that goes to trillions.  A calculator that prints reams of numbers on gobs of calculator paper. 

One that makes a very satisfying ker-chunk ker-chunk ker-chunk sound when you hit the + button. (My dad’s an accountant so I think Conor inherited the love of the sound. It IS a cool sound, except when you’re totaling up the bills you owe.)

The mother of all accountant calculators

Oh, and it was $80.  Yeah, that’s right, eighty smackers.  For a calculator.  I know, really.

“Conor,” said my husband, “that’s too much money to spend on a gift for Mom.  We’re only spending $25.  We can go to the store tomorrow.”

No one tells me "No", @@#%^&

OH NO YOU DIDN’T!  

You did NOT just tell Conor NO?!?

I thought the poor kid’s head was going to explode.  The gnashing of the teeth commenced. He didn’t have a tantrum, but I tell ya, it was a close one.  It took a good hour or so to talk him down off the ledge.

24 hours later, he’s still fixated on the calculator.

“Mommy might not want a calculator, Conor,” his weekend therapist said the next day, trying to reason with him.  “Do you think that Mommy really wants a calculator?  Or maybe she’d like something else?”

(A pair of earrings, I mouthed at her behind his head, pointing at my ear lobes.  Earrings.)

“Maybe Mom would like a pair of earrings?” she asked.

And to Conor, who simply lacks the capacity to think about what someone else might want, this was incomprehensible.  He just can’t fathom why anyone would want to buy anything else.  He loves calculators, he wants to buy a calculator. (And let’s be honest, he would use the calculator, wouldn’t he?)

Well, Conor, it IS a pretty awesome calculator.  It’s eighty bucks, it has to be.  But I’d still rather have a pair of earrings.  Or maybe a new purse.  If you can convince Daddy to spend the eighty bucks, dude, get the purse.

Ok, ok, I KNOW it's more than $80.  But I'm a MOM, you know.
A MOM. 13 hours of labor oughta get ya a nice purse.

  

Like, Right Now? This Minute?

Yesterday, Conor's new Occupational Therapist (OT) called on my cell to talk about our upcoming IEP meeting.

First of all, I had no idea the old OT left, which tells you about my lack of supervisory skills concerning my son and school. Maybe they told me and I forgot. Or maybe they neglected to tell me. Who knows?

( Occupational therapists help people improve their ability to perform tasks in their daily living and work environments. They work with individuals who have mentally, physically, developmentally, socially or emotionally disabling conditions such as autism.)

The new OT was very peppy. Like a Bichon Frise.

"I love working with Conor, he's so much fun! I'm excited that he's accomplished all his objectives on his IEP, so we thought we could discontinue pull-out services and just accomplish whatever we think he needs in the classroom. How do you feel about that?" she gushed.

Gee, I don't know, how about setting new, more challenging objectives instead of a radical change because he met the old ones? The kid can't even tie his shoes and, when he writes, his Rs look like Vs.

And even though Conor's not the most self-stimulatory kid, he benefits a lot from his work on the various swings and balls. It helps to reduce his anxiety. He also needs work on his core (he has hypotonia in his chest and abdomen as well as in his arms). 

It looks like fun, but OT can be hard work for the people that need it.
I don't think this will all fit in his classroom.
(The OT room at Conor's school is not this big, BTW.)

I don't know. Do I really need to decide, here on the phone, in the next five minutes about therapy my son needs? Couldn't we talk about it with the rest of the team?

In the IEP meeting, perhaps?

Maybe this is just another misunderstanding on my part. Maybe she's not saying to go from OT once a week to "as needed". Maybe all she's saying is that his services should take place in the classroom. Really, I'm sure that's just what she's saying.  I think.

Oy, my head hurts.

I'm trying not to freak out because I've freaked out before and then been embarrassed. But freaking out is one of my core skills, so I tend to do it a lot. I'm really, really good at it. I list it under "Special Skills" on my resume.

So, I do what I always do in this type of situation.

"Um... you'll want to talk to my husband about this?" I replied. "He's unavailable right now, but I'll have him call you right back."

This looks like it could hurt.

I have three very good reasons to punt this flaming football in his court.
1) Jim does not freak out.

Jim gets mad, calmly discusses why it would be in the very best interest of the other person to give him exactly what he wants, and then the other person quickly agrees.

It's annoying how good he is at this. It's awesome when we travel, though, because we totally get upgraded all the time.

2) Jim knows more about OT than me.

When we did OT in our home for six years, Jim spent each hour with Conor and the therapist actually assisting with the therapy. So he knows the ins and outs of it much better than me. He knows Conor's weaknesses and strengths in this area.

I happily acquiesced occupational therapy sessions to my husband a long time ago (one less thing for me to worry about) and didn't mind at all that the therapist was a beautiful blond, way super nice, and talented at her job. No, didn't mind at all.

3) I didn't want to deal with it. 


There, I said it. Call me lazy, call me crazy, I just didn't want to agree to a plan of action that I hadn't completely thought out, brought to me by an unexpected phone call from a woman I had never even met and didn't know existed until five minutes ago. (Well, I knew she existed, I just thought she was someone else.  Oh, never mind.)

Well, that, and I just didn't want to deal with it.

Put It On The Calendar

Lately I’ve been thinking a lot about Conor’s future.  I can’t help it, I’m a “planner” at heart.  I can be spontaneous, as long as I schedule time for that on the calendar.

Plus, planning makes me feel like I have more control over this autism thing. Now that Conor’s a teenager, I have to start thinking about what we’re all going to do when he becomes an adult.

We’re no spring chickens after all.  I’m a summer chicken, and Jimmy’s eleven years older than me so he’s an autumn chicken.  (Sorry, sweetheart, maybe an Indian summer chicken?)

We’re getting older, I’m getting lamer (physically, watch it), and Conor’s getting bigger. And so, I plan.

Many parents of children with developmental disabilities can’t imagine their child living outside their home.  Me? I kind of thought that getting your children safely grown and the hell out of your house was a sign of successful parenting.  

You teach them how to hunt, clean and gut a fish, pick up their damn clothes off the floor already, read a book, scrub a toilet, and get a job, right? 

Right?

So I’ve had to really change my definition of successful parenting when my son regressed and then again when he developed a real behavior problem.

Recently, I got a look at a residential house for two young women with autism.  I really liked the model of sharing a house and sharing staff as these two women began to live (sort of, kind of, but not really) independently. 

Never mind that the two ladies weren’t really getting along all that well. My husband bugs me often enough and we’re still living together. 

(Love you, honey.)

There’s a house manager in the house 24 hours a day to support the women, and there are support staff that cycle through in shifts.  Each woman has her own 1:1 throughout the day and is transported to vocational programs during the day as well. I’m not sure exactly how many support people are employed specifically for these two women, but, by my count, there’s got to be at least 6 plus a supervisor for them all.

My lord, they must have more people to service them than Hugh Hefner does. But that’s the reality.  That’s what it takes to support many individuals with autism successfully.

So… back to the squirrels in my addled brain. The way I figure it, my husband and I will build a compound, much like the Kennedys. It would be fabulous, and have all the amenities like a shared pool with hot tub, fire pit, basketball court, tire swing, common outdoor patio area with a gas grill, and, of course, an organic vegetable garden.

The compound will have four houses: 

Client house: a house for my son and a buddy with autism, and their live-in and daily support staff.

Caretaker house: a dwelling for a “House Mom” or “House Dad” and their family. I’m thinking maybe they’ll have their own family there so we’ll have to find land in a good public school district. Rent will be free. They’ll be responsible for making sure the house coverage runs smoothly, so Jim and I can go on cruises and stuff. I figure a solid salary and free rent with good public schools makes for a pretty good compensation package. Retention of good employees is so important.

Our house:  one-level home, or at least the master bedroom on the first floor.  (Remember, this is for us when we get old.  Reallly old.)

Other parent house:  we can sell a parcel of the land to the other parent and they can build whatever they want.

Here, I drew a picture of it for you.

And, for the client house and the caretaker house, the two families will establish separate trusts that will fund both the ongoing maintenance, property taxes, support staff, sundries, groceries, etc.

 We’ll establish the trusts right after we both win (and split) the $102 million Mega Millions lottery.

Hey, it could happen, right?