A Numbers Game

It’s been 23 days since Conor’s last raging tantrum.  23 days of good behavior. Here are the numbers---

We want the line to go UP, since that's the number of days between bursts.
(Bursts=tantrum)

Sorry about the formatting; still working on it.

You would think that this would make me ecstatic.  After all, this is the third longest stretch without a tantrum since he was discharged from Kennedy Krieger Institute’s NeuroBehavioral Unit (NBU).

It’s not that I don’t want to be happy.  I’m extremely grateful for the long stretch, don’t get me wrong.  I’ve actually been reveling in the happy and the quiet. We've been working so hard, and things have seemed so normal, so functional.

It’s just…

I don’t want to get my hopes up. 

He’s had long stretches of good behavior before.  Honestly, we went four months in the summer of 2010 where he didn’t have one aggressive or self-injurious behavior.  Not one. Two months later he was in Sheppard Pratt for his first hospitalization.

Sometimes, when you know what to expect, it’s easier.  Even if what you expect is hard, and exhausting, and disappointing, and miserable, at least you can prepare for it.  You know how to grit your teeth and just power through it.  Kind of like in a horror movie, it’s the ones that sneak up on you that scare the crap out of you the most.

I don’t want to let my guard down.  I don’t want to get used to happy and quiet.  Because if it doesn’t last, I don’t want to be disappointed again.

Conor’s kind of like an old high school flame.  You know the one that broke your heart again and again and again?  Each time, you think that this time might be different.  It will work out. You won’t get your heart broken this time.

I’m hopeful.  I wish this time would be different.  I hope it will be different. Because I’m tired of being a parent that keeps data on her kid.

The Anxiety Morning of the Autie Mom

Oh my god oh my god I’m having a total anxiety attack this morning because the social story I’ve worked on for hours and hours yesterday isn’t printing out correctly even though it looks fine on the page and I’m travelling with Conor to Florida for four days starting on Saturday and I have to pack everything and what if I forget something (flax seed) and I have to take the dog to the kennel (confirm kennel) and go to the grocery store and take his brother to my mothers and then we get back for a day and a half and get Aidan and then drive to Connecticut for four days and what if I forget something like the basketball Easter basket or the iPad (charger) or the boarding passes and Conor has a tantrum (oh god what if we sit on the tarmac for hours and hours) don’t forget to pack the bathing suits and the goggles and the rice milk (sweet potato) and I have to write another social story this time about the new iTouch protocol but the first one about the calendar isn’t even working and I have to go to three stores to return things from Christmas and I have to do it now because soon it will be too late and they won’t accept the returns because it’ll be past the 90 day cut off return date and Aidan has guitar lessons this Wednesday, next Wednesday, and I have to take the frogs back to the school since we didn’t kill them over spring break thank god and Conor’s got to go to the pediatrician for a follow-up to the follow-up after the NBU discharge and I’ve got to pay the bills and follow up on my emails and the strategic planning committee and the taxes oh no April 15^th is coming up soon and I haven’t even started getting the information together to file an extension and don’t forget to stop the newspapers and I’ve forgotten something I just know it.

Deep breaths, deep breaths.

Do you think I have time for a pedicure?

The Existential Conor

I don’t know what they are teaching my son in his school.  It must be some sort of existentialist philosophy.  Or transcendentalism.  Or something like that.  I confess, I don’t know much about philosophy.  I had one class in college, and all I remember from that course was that some poor freshman said orgasm when she meant to say organism.

I felt sorry for her but, hey, you can’t NOT laugh at that.

Anyway, this past week, Conor’s been coming up with all these weird questions about word definitions.

“Mom, what does 'I' mean?” he asked me the other day.

“What do you mean, what does 'I' mean?  You mean, what do you mean?” (He messes up pronouns all the time, so I thought he had made a mistake.)

“NO! What does 'I' mean?” he repeated, mumbling.

“Can you spell it?” I asked.

“I,” he said. 

Oh, yeah, ok.  “I means you, Conor,” I said.

“You?” he said with a blank look on his face.

“No, not you, I.”  Oh boy. How do I explain this one? My brain hurt.

Or take today for example.  Resting on my bed, Conor looked up at me and asked, “What does ‘end up’ mean?”

“What do you mean, ‘end up’?  Can you use it in a sentence?” I asked, trying to figure out where he heard the term so I could address it in the right context.  That, and I was stalling for time trying to figure out the clearest way to explain this simple word.

“What does end up mean,” he replied.  Well, that’s a sentence all right.

Or after his bath.  “Mom, what does ‘has’ mean?”

Oh, for the love of Pete.  I can’t wait until he asks me what the meaning of ‘is’ is.  That one will be easy.  I can just channel President Clinton.

Well, Conor… "It depends on what the meaning of the word 'is' is. If the--if he--if 'is' means is and never has been, that is not--that is one thing. If it means there is none, that was a completely true statement....”

See?  Easy-peasy.  What he said.

Are You Ready for the Summer?

Today we drove two hours to Maryland’s Eastern Shore to look at a prospective summer sleep-away camp for Conor.

Two hours, one way that is. To have an interview.  To see if they’ll accept him. Maybe. For a residential camp that is five days and four nights long.

Sigh.

The past two months I have had three panic attacks, two crying jags, six conference calls and one major freak-out episode over the upcoming summer break. 



And it’s not even the end of March! And he has school the entire month of July because he’s in an 11-month program.

What it boils down to is that we have to fill five weeks of empty, unstructured days with some sort of structure for my autie.  35 days.  That's more than a month, combined. Gulp.

I think only another parent of a child with autism understands the level of deep breathing, hand trembling, and wine drinking that this presents. (Don't worry, I've already started drinking.  Get a jump on things, I always say. Why procrastinate?)

Of course, finding the right camp for Conor raises some pretty significant challenges. He has to have a 1:1, that’s a given. Can you imagine trying to watch Conor AND another camper with autism? Yeah, right.  And the camp has to have a pretty high level of training for its counselors.  For obvious reasons. Um, hello, tantrums?

The camp needs to have Internet access, which sounds easy.  It’s the year 2012 after all. But one camp I liked is located in the mountains of western Maryland and they have snails that connect faster than the Internet.  Forget cell service. (I know, can you imagine?) Conor is reinforced for good behavior by his access to electronics, and a lot of that time on the electronics is spent accessing the Internet.

You know, so he can look at ceiling fans, shop for calculators, and ogle pictures of Beyonce.

(One camp also recommends not bringing an iPad with him if he doesn’t need it to communicate.  Because it’s a “camp setting,” which I assume is code for “someone will steal your shit”.  


Seriously?)

And don’t forget the community outings.  He works for community outings, to spend his ducats on some nice puzzle bling or bowling. So camp has to be close enough for us to pick him up and figure out what do to about the outing.

Double sigh.

I don’t know why it’s so damn hard.  I see other parents sending their kids with autism off to these sleep away camps.  They tell me their kids have difficult behaviors.  Am I just the definition of a loathsome helicopter mom that can’t let her kid go, or is he really that complicated?  Is it both?

I mean, he’s very verbal but still needs so much translation. So much walking-on-eggshells management.

I feel like I need to write a technical manual explaining all things Conor for camp personnel.  But who reads those things anyway, honestly? (Maybe I should start a Wikipedia page about all things Conor. Wouldn’t that be AWESOME?)

In any case, I am proud to say that my boy aced that interview today.  By "aced", I mean slept through more than half of it. Put his head right down on the hard, laminated-wooden cafeteria table and fell asleep. (It IS a "sleep"-away camp, after all.)

Awesome!  Maybe they'll think his biggest behavioral problem will be that he sleeps too much.

It’s extremely important to me that Conor master this sleep-away camp thing. Selfishly, I would like to have somewhere he could go for a few days so we could have some respite and some downtime. Some breathing room, really. (How else am I going to be able to go clubbing all hours of the night with my girlfriends and get a tattoo I'll regret later?)

Selflessly, he needs it--to grow, and mature, and be independent.  Well, as independent as anyone needing a 1:1 aid can be, I suppose.  It would be good for him, to have to learn to advocate for himself and enjoy being out from under Mom and Dad’s thumb.  For a few days at least.

Or maybe, just maybe, what it boils down to is that I always begged my mom to go to summer camp, even just for a week. We could never afford it. (Something ridiculous about saving for college for four children or some such nonsense.)

Maybe I’m just trying to live vicariously through my son.  Maybe I just want some sleep. Or maybe, just maybe, I think it'll be just as much fun as the camp in Meatballs. (The best camp in this price range, according to Tripper Harrison.) 


Either way, I’ve got my fingers crossed.

Conor Porn

My son loves ceiling fans.  He lusts after them like Hugh Hefner lusts after twenty-year old buxom platinum blondes with questionable taste and a mediocre education.

Honestly, when he’s seventeen, I expect to catch Conor ogling the Big Ass Fans website (www.bigassfans.com) as often as he’s staring at pictures of Beyonce on the computer.

Conor's favorite Beyonce picture. He has the album.

I’m not going to lie to you.  I’ve caught Conor checking out the ceiling fans on amazon.com. 

As a matter of fact, I’ve found quite a few in the shopping cart.  I tell you, I’m beside myself trying to decide whether a frank talk is in order about boundaries and respect and listening to the word “no”, or whether to just put saltpeter in his cranberry juice.

His is an enduring lust, resistant to the call of reason or clarity.  He has not grown out of this lust (nor will he ever, I suspect).  

Thankfully, through years of concerted effort and cognitive development, we no longer have to drag him off of restaurant tables as he vainly tries to turn the ceiling fans on or off.

No means no, Conor, I tell him. And I’m not gonna be the last lady to tell you to get your hands off the switch, buddy.  You can looky, but no touchy.

There was a time, a more innocent time, when Conor would lust after any ceiling fan he saw.  Industrial, residential, wooden or steel, it didn’t matter. Any ceiling fan would turn his head.

Until Florida, that is.  In Florida, Conor was introduced to the palm frond ceiling fan.  And that was the beginning of his singular desire for ceiling fans with palm fronds for blades.  Fake fronds, of course.  (Isn’t that always the way, ladies? Never satisfied with the real deal. Men.)

Here's a video of Conor porn.  Don't tell him I have it; he may try to hack into my computer.

The Artist Currently Known As Conor

Edvard Munch's The Scream.  One of my favorite paintings.

Art plays an integral role in Conor’s life.  This is of his choosing, but I won’t deny giving him every opportunity to express himself through art.  I’m hoping, I suppose, that he’ll give me some insight into his inner world through his artistic expressions.

It obsesses me, trying to figure out what’s going on in that mis-connected brain of my son. I’m continually searching for the why of Conor’s behavior. There are often no answers, even from the professionals. He can’t tell me the why with his words. So I turn to his art.

His row house

Conor shuns drawing.  He’s passionate about mixed media, sculpture and clay, with a fascination for architecture and large-scale projects.  This passion keeps his art therapist challenged.  Together, they’ve made a row house (complete with electricity), a museum, a fish aquarium, a shopping mall, and are currently working on an airport.

Yes, you heard me correctly, an airport, complete with escalator, a people-mover, baggage claim, one plane, a bowling alley, a vending machine with drinks AND food, and 485 stores.  Among other things. We’re busy talking him down from the 485 stores because my house just isn’t that big.

(Although we could move the project to the garage, work on it for twenty-five years, and then submit the whole thing to the Visionary Arts Museum.  If you’re not familiar with the Visionary Arts Museum in Baltimore, you’re missing out.)

I can’t say that all of Conor’s art is fine art and works of sculpture.  Sometimes it’s just an itch he needs to scratch.  He goes to a paint-your-own-pottery place and paints soap dispensers, salt-and-pepper shakers, figurines, Christmas ornaments, spoon holders, and planters.  But these things seem almost slap-and-dash, where the doing is more important than the final product. Although they are no less dear to him.

And, of course, there are the birdhouses and decorative plates.  He tries to copy the pictures on the boxes, down to the I Love You Mommy and Daddy and the Happy Birthday messages.  I want to believe he means these words, even though he isn’t original in the design and words.


Maybe it’s just easier to copy something that expresses his thoughts rather than trying to express them in his own words, since words fail him so often.

Perhaps it's futile, my attempts to glean something from Conor’s works of art. Without his interpretation and direction, it may be fruitless.  But I’ll keep trying.  And I’m sure he’ll keep creating.

In his own words and voice, Conor explains his Dinosaur Museum. Despite having some behavioral challenges during the late winter/easrly spring of 2010, he was not on an anti-psychotic here, which explains his slender physique.  (Behaviors started up again in October 2010.) He was 11 years old in August 2010. I'm not sure if I shared this before, but in any case, enjoy.

The Cobra

It happens in a flash.  It comes out of nowhere, catching me off guard. I don’t always have time to get my hands up.

My son, he’s like a cobra.

We’ll be walking along, and quick as quick can be, he darts his hand out to touch my neck.  Then he sing-songs in that falsetto voice of his—

“Mommy is a llama, Mommy is a llama, Mommy is a llama.”♪♪

Always three times. Always.

I’m not sure when it even started.  But for years, Conor has been obsessed with touching my neck and it’s starting to become a battle between us.

I hate it. Even though it makes him happy, I hate it.

I should say that he isn’t being aggressive.  It’s not like he’s trying to choke me.  For whatever reason, holding my neck used to bring Conor great comfort when he was younger.  Kind of like a blanky.  A necky, I suppose.

But as his behavior became more erratic and aggressive, and he inched closer to teen-dom, it started to give me the creeps.  It’s one thing if a calm 7 year old holds his hand on your throat.  It’s a whole other ball game when a volatile 12 year old does it.

My current strategy is to block, re-direct, and ignore the “lama” part.  (What IS that?  So much of his behavior is just inexplicable.)

Sometimes, though, I see him looking at me. At my throat. And he’s got that gleam in his eye.  And I know the cobra is about to strike.

Cheater, Cheater, Pumpkin Eater

I remember the first time Conor lied to me like it was yesterday. 

For those that don’t know, it’s a common misperception that people with autism can not tell lies.  Some sort of horse hockey linked to their tendency to be literal, I suppose.

Not my guy.  He’ll look you right in the eye and he’ll lie.

“Conor, did you write on the wall?”

“No.”

C’mon, Conor, who else would write the name of his current girl obsession on the wall?  It says “Vera” right there. Fess up.

“Conor, just tell me the truth, did you write that on the wall?”

“No.”  You can tell, though.  He looks you in the eye but he wrings his hands.

The evidence to convict

Over the years, Conor has improved on his lying technique, but not by much.  Now, everything’s an “accident”.

“Did you just throw that book, Conor? I heard you throw it.”

“It was an accident!” he declares.  “I’m on Level 3.”

Ok, now, how does a book get thrown by accident?  Honestly, Conor, did you throw that book?  “No!  It was an accident.”

Wait, it gets better.  Now, he tells on himself, even as he’s lying about it. 

I’ll be standing at the stove cooking dinner while helping Aidan with his homework (I am woman, see me multi-task), and he’ll come to the kitchen door and blurt out…”Conor’s on Level 3, it was an accident.”  And then hold his hand up for a high-five.  What?  What now?

Conor’s immune to misdeeds if we don’t witness them ourselves; he doesn’t know we can’t touch him if he confesses.  But we don’t tell him that.

So when the behavioral therapist at Kennedy Krieger asked me if Conor cheated, I swore that no, he doesn’t cheat.  He lies, oh boy, can my boy lie to you but cheating?  Nah, he follows the rules. (We’re talking about tweaking his behavioral protocol and it’s important to know if he’ll cheat or religiously follow the rules.)

So when we caught Conor downloading an entire album of Chely Wright songs on his iPad behind our backs and without permission on a day when he knows that it’s not allowed, I was horrified and incensed.

Ok, not really.  I was amazed and bemused that he figured out how to do this.  I guess if you enter a password on iTunes to download an application on your iPad (which his father DID approve), you can go back into iTunes and purchase whatever your heart desires without re-entering the password.

The old bait-and-switch.  Yeah, we're suckers.

"Daddy, want Conor to have some downtime?  Want Daddy to leave the room?"  Tricky-dicky.

(BTW, he DID get the ten bucks taken out of his allowance next week. There was a consequence. Unfortunately, I think it's overshadowed by the sheer joy of listening to the bootlegged songs.)

That smarty pants.  That lyin’, cheatin’, scheming smarty-pants played us like fools in a bad country and western song. You gotta give him credit for that.




I'm not a big country music fan, but when I was researching videos to go with this post, I stumbled upon this one. Fun!

Sigh and Shrug

Conor had a burst at school today.  (For you newbies, a burst is autism-speak for a raging tantrum. It makes me think of fireworks, which is an apt metaphor.)

Usually, when I get these phone calls, I do one of three things.

Burst into tears and sob uncontrollably.

Sigh, shrug my shoulders and say to myself "what-ever". 

(La-la-la-la, not listening.)

Hold my head while simultaneously repeating my mantra to myself. 

“I can’t believe this is my life.  I can’t believe this is my life. I can’t believe this is my life.” At this point, I also consider starting a really mean heroin habit.

Today was one of those “sigh and shrug” days, most likely because it’s been 25 days since his last tantrum.  (That, and I just finished my period, which means I’m emotionally stable.  For about the next two weeks. LOVE peri-menopause, NOT.  Sorry manly readers.)

Oh, we’ve had major upsets, but he’s been able to hold himself together for a long-ish period of time.

When the school called this afternoon, our case manager filled me in on the details.  It lasted about 30-35 minutes, he didn’t wet his pants this time, and it seemed less severe than usual but he still had to be in the counseling room.  They didn’t know the antecedent (autism-speak for the cause of the behavior), but he did know it started with Conor throwing his lunch box at his 1:1 aid in the gym.

Why you would throw anything at a 6’4” former college basketball player from Baltimore’s East Side that can palm your entire head in one hand is beyond me. But Conor’s not rational about these things.

Typically, we don’t talk with Conor about these things.  It’s best to move on, and not give him undue attention for the bad behavior. Good behavior, sure, we whoop and holler and high-five for that, but not the bad.

I couldn’t help myself, though.  Conor’s not the only one that has trouble following the rules, I guess.

“What made you so upset today, Conor?” I asked him, twisting around in the front seat to look at him when I stopped at a red light. I had picked him up at school.  “Why did you have a tantrum?”

“Conor didn’t want to wait for the basketball,” he replied, looking at me.  “Want Darren to not play basketball.” It’s amazing how good his eye contact can be, when he wants it to.

“You have to learn to share and be patient, Conor,” I said. “You just have to.”

Just Breathe

For the past few weeks, three times a week, we've been visiting the Kennedy Krieger Institute's outpatient NeuroBehavioral Unit.  Originally, they were hoping to do a functional assessment of Conor's perseverations.  (Perseverations are the verbalizations of Conor's obsessive thoughts.) The constant barrage of perseverations are enough to make me climb the wall while simultaneously pulling my hair out. (It sounds difficult to do both, but it's possible after a few hours of this stuff.)

See, here I go after about 15 minutes.

So I was very happy to run down there three times a week to get a grip on this.  Please, just tell me what to do and I'll do it!  (I hear the Bush administration said that listening to Conor's perseverations for hours was not torture, but I beg to differ.) Conor, of course, had other ideas.  With the team of people trained to figure out why he was haranguing us with these perseverations, he did not utter one, single perseveration.  

Not one.

So, as I grit my teeth, we moved on to the second priority.  

For years, nothing Jim and I tried could stop a tantrum in its tracks.  You could see it coming, but no matter what we did or said, it was like a freight train with no brakes.  You just had to meet it head on and wait for it to lose steam.

Oh, we tried having him write in a journal; he wrote people letters and postcards. We tried having him listen to music, encouraged him to stomp his feet, had him lay down in his bed, count to ten, count from one hundred backwards, and tried to teach him to label his emotions. And medication, don't forget the medication.

Nothing.  It was like a force of nature.

So when the behavioral team at Kennedy Krieger suggested we try Behavioral Relaxation Techniques (BRTs) with Conor, you could say I was a little skeptical.  I can't help it; it's in my nature to be skeptical.  (I also have trust and commitment issues, just ask my therapist.)

No way, I thought. There is NO WAY that sitting down, taking deep breaths, closing his eyes, and sitting a certain way would help Conor avoid a raging tantrum. The behavior team worked with Conor for hours and hours on this relaxation technique.  This is silly, I thought once.  (I kept my thoughts to myself, though. I'm skeptical, not stupid.)

They had us practice this at home twice a day as well.  Five minutes of relaxation technique before school, five minutes when he gets home.

Then what do my doubting eyes now see?  Conor actually likes to "relax".  I know, he told me so.  He asks (over and over and over and over, Lord help me) when he'll go back to Kennedy Krieger for BRTs.  He's had at least two major upsets that did not escalate into tantrums, due, in part, to being able to use his newly learned techniques to calm himself.  (That, and the desire to earn his bonus money for the week. Money talks, baby.  Pretty loudly to my kid.)

I have to admit, I'm not a skeptic anymore.  Not about the Behavioral Relaxation Techniques.  

So now Spring is coming and that means baseball season. I'm hoping my husband will join Conor and start practicing some BRTs when the Red Sox start playing.  That should cut down on some of the yelling, at least by my husband.

Ya think?

My son's a little obsessed.

Today, I counted 30 birdhouses he's painted.

He's painted pirate ships...

And castle towers...

And rocket ships.

He's chosen miniature birdhouses (but not very many).

And he's painted a pretty gazebo for your garden.  

(But it would have to to be an indoor garden.)

"Why does this one have three holes, Daddy?"

"It's a condominium for birds, Conor, that's why"