Just a quick note

Dear Conor,

The next time you decide to have a 45 minute grand-mal tantrum, please do it before the 25 year-old, 6' 4", one-time bar bouncer, broad-shouldered, soft-spoken former basketball player for Tuskegee University that we pay $20 an hour to watch you leaves for the day.

Your father and I are getting too old for this shit.

Thanks, Mom

Bumper-To-Bumper

I get the sense that every post I write during or after a holiday or vacation with Conor ends up discussing the same aspect of parenting my child with autism.

Honestly, I feel like the skin over my entire body has been scraped fifty times with the edge of a dull spoon, rubbed raw with unbearable stress and anxiety. It’s truly a physical sensation. 

Eventually it goes away, with the start of school and a good dose of red wine. (And maybe a ladies’ night next week, but don’t tell my husband just yet.)

Of course, I’m just coming off of four days of intense family togetherness, brought on by the Christmas holiday and travelling 744 miles in three days in the back seat with Conor to visit my in-laws in Connecticut and Rhode Island.

At one point, having bested our nemesis on the return trip (the New Jersey Turnpike, that mangy curr), we ran into a wall of traffic on I95 in northern Maryland. (Oh Maryland, My Maryland, how you disappointed me so.)

Oh, we tried our best to hold it together.  We’d been in the car since 8:30am, after all, and it was now 2:45pm.  We’d stopped once in New York for a pit stop, watched movies, ate our snacks, listened to our CDs, took naps, played iTouches and iPhones.

Then, WHAM! The wall of traffic.  It was like the parking lot before a Ravens game, without the burgers and beer.  No movement.  Nada.  Not going anywhere.

The GPS teased us, saying we had only 48 minutes more to go and yet… it took us 45 minutes to go the mile to the nearest exit for a detour around the parking lot that was now the interstate.  (Construction, according to my iPhone traffic app.)

You could feel the tension building in the car as Conor became more and more insistent that we get going already.

“Want the traffic to not be stopping!” he squealed, shifting quickly around in his seat.

“I know, Conor, we all want that,” I replied quietly. Oh no, I thought to myself.  It's starting.

“Want the three thousand cars to be moving!” he whined even louder and gesticulating wildly at the traffic in front of us.

“It certainly does look like three thousand cars,” I agreed, trying to keep him calm.  “You’re doing a great job being calm and on Level 3, sweetie.”  Level 3 is the place to be! 

Please, dear God, don’t have a tantrum in the car again, I can’t handle that right now.

“Want to be at Conor’s house!”  Oh man, he was really getting amped up. I felt nauseous.

Luckily, we finally made it to the exit and, thanks to the GPS (that tease), we were able to wind our way home by another route.  Good ol' Pulaski Highway.

And.... Repeat

The first time Conor addressed me directly, it was breathtaking.  Overwhelming.  Mind blowing, mind boggling, mind bending. (Like The Matrix. It was like, WOW. WHOA. There's an alternate universe?)

I guess he started this about eight or nine months ago.

Mom?! And an appropriate question would follow.


Mom?!  When can Conor go to the mall?


Mom?!  What time will Aidan be home?


Mom?! Where will Conor go to dinner tonight?


It seemed so normal.  Typical, even. A breakthrough! It happened during art therapy, something must have clicked. It's working!!  He wants to get my attention and talk to me. Just me! How exciting! (Insert squeals of happiness and hand clasping here.)


After a day or two, however, I realized that this, too, would become a double-edge sword. (As so many things in this autism can be. Bittersweet personified.)

So awesome that he addresses me directly.  And he maintained this skill!  (So many skills are fleeting, coming and going with no clear explanation why they don't stick despite all our hard work.)

But then...

Then came the perseverations.  Oh, he's always been obsessive.  (Perseverations are obsessions in autism-speak. Don't ask.)  It's been a huge challenge and continues to get in the way of his progress. It can lead to upset and (sharp intake of breath) tantrums.

Want a little sample?  Read aloud all the sentences below, in a clear, insistent voice, have a tantrum when you don't get what you want, and then check out the video at the end. (I love Stewie.)

And that's just a sample. A little taste. An amuse-bouche, if you will.

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings??

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!   On December 31st, Conor will go to the Hultings?

Mom?!  When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!   On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!   On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!   On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!   On December 31st, Conor will go to the Hultings?

Mom?!  When will Conor go to the Hultings and download a video on the computer?

Mom?!   When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!   On December 31st, Conor will go to the Hultings?

Mom?!   When will Conor go to the Hultings and download a video on the computer?

Mom?!  When will Conor go to the Hultings and make a Mii named Ruth on the Wii?

Mom?!  On December 31st, Conor will go to the Hultings?

Sorry for all the Hulu crap.  It was the best quality.

Wine and Concealer

I've started to make my packing list for our trip to Connecticut the day after Christmas.  Nothing says Christmas more than doing twelve loads of laundry and packing.

My packing list has twenty seven items on it, most of which are food and current, portable obsessive items of Conor. Who cares if I remember underwear, for god's sake, don't forget the rice cakes.

(Yes, I know they have rice cakes in Connecticut, Mom, but I don't want to have to run to the store and get them.  And who knows if they carry the right brand. Generic rice cakes = blech.)

Travelling with Conor generates stress, for weeks on end.  Forget that we're only going to be gone three days (two of which will be spent in an interminable seven hour stretch in the car). With Conor, whether it's an afternoon or a week, you have to plan, plan, plan.

I think we'll survive.  Oh, our nerves will be frayed and I'm sure my husband will be pleased with the silent treatment I'm already planning for the return drive.  (Best to plan ahead for these things, based on experience.)

But we'll get through it.  And thanks to a friend who has a child on the spectrum, I know exactly what to pack.  At least I'll know my bag will be light.

A Simpler Life

Aidan and I were driving home from his second guitar lesson last week, and we wound our way up a side street in our neighborhood.  It was late, the road was empty, and so I was able to glance around at the Christmas lights dangling from evergreens and trees that shone through the windows. 

On this street, most of the homes are two or three story row homes, the old kind with wrap-around porches and wooden steps with rickety railings and kids' bikes left out in the cold.

 

In my mind, I pictured the carefree lives of their residents, the quiet, uncomplicated lives of families without hardship.  I know this is folly, that other people have difficulties and tragedies, but Joan Didion isn't the only one capable of magical thinking.  It's not helpful to indulge in this bad habit of mine, but there it is.

 

"I wish our lives were simpler, Aidan," I said as I drove up the hill, focusing again on the road ahead.  "Less chaotic and complicated."

 

"It can be simple, Mom," he replied in his confident voice.  "You just have to live in the moment. It's simpler that way."

Tick Tock Conor's A Clock

Recently, we've seen an increase in Conor's tics.  An uptick, if you will. (Sorry, bad pun.)

Conor developed a tic disorder two years ago.  Since he's had it for more than 12 months, he officially has Tourette Syndrome. (In addition to the lovely autism.)

It waxes and wanes, comes and goes, hither and yon. (The tics, that is. The autism never leaves.)

For a long time now, his tics have been controlled by medication.  But in the last week or so, we've all noticed that he's having more tics.

(Is it ticing or ticking?  Spell check can't quite figure it out and I'm too tired to look it up.)

He tics like a clock, like a metronome, like an egg timer, like a time bomb.

Tic, tic, tic, tic, tic, tic, tic, tic, tic, tic, tic, tic, tic.

Here's what the tics look like. This was taken in February 2010. BCWB.  (Before Conor Went Bazooka. He's so slender, pre-antipsychotic medication.)  The tics he's having now are the same, but more subtle.  Muted.

Sorry for the video quality; I have no idea why it's so blurry.



Of course, this is freaking me out, especially since his aide at school reported that not only is Conor exhibiting more tics, he is scripting more.

(For non-autism folks, scripting is when a person repetitively says lines from a movie, book, computer game or TV show.  Conor, for example, will randomly repeat lines from PBS Kids computer games or from Blues Clues episodes.)

To me, it's just a sign that something in his brain is going all jabberwocky. More than usual, I mean.

Honestly, I guess I can't expect to understand what is going on in there when psychiatrist, neurologists, scientists, and Freudians don't even know what's going on.

Time to call the doctor anyway, I guess.

Oh Yes, They Call Him the Streak

Watching a 12-year-old doing somersaults onto his bed while he’s fully naked is some sight to see.  Just take my word for it.

Oh Lord, Conor, that is NOT a good view, seriously. (Although now I think he needs some diaper rash ointment. Good to know.)

May I say, by the way, that I am thrilled that Conor is independent in the shower.  Oh, we yell in there to make sure he washes the stinky parts and try to slyly investigate that he’s actually put the shampoo in his hair (and then washed it out, that’s key).

Whether he washes his face adequately is debatable, but at least we have the Clearasil wipes to help with the burgeoning acne. And he religiously applies his deodorant every night.  We started when he was nine years old because I didn’t want any fighting about it. 

(His favorite scent?  Lavender.  He’s in touch with his feminine side.)

As soon as he’s finished in the shower, he walks over to the bathroom door and wham!  Slams it open.  He hangs up the towel and the bath mat (after cleaning up all the puddles of water on the floor).  All totally, completely, entirely, wholly buck-naked.

And then he skips (skips, no lie) naked into his bedroom, screeching and hooting and hollering. And don’t forget the onto-the-bed-somersault.  It is, as I’ve said, quite remarkable. Eyebrow raising, even.

Living with Conor makes you question any hang up you might have about being naked in front of another person.  Clearly, it has never occurred to him that being naked is anything out of the ordinary.

Evidently, clothes are simply for warmth.  Otherwise, why bother? I think he’d be right at home at a nudist colony.  Hey, skippity-do-da, skippity-ay, look at me!

After Conor was diagnosed, I did a lot of reading.  And when I read that children with autism have trouble with social norms, they didn’t mention this.  The nakedness, I mean. I thought they meant he didn’t know how to shake hands and say “Nice to meet you.”

Honestly, when he was seven, it took us the better part of a summer to convince him that you shouldn’t change into your bathing suit at the side of the pool.  Really, Conor, it’s more polite to use the cabana or go inside the house.  That’s the social norm.

“Do five year olds change their pants at the pool?” he’d yell.

“No, Conor,” we’d patiently reply.  “You have to go inside to change. I don’t care if you change in the closet, just go inside.”

It was like he was some sort of drunk frat boy.  You couldn’t reason with him.  Why should he have to change inside, in the privacy of his home? He’s actually had a few tantrums over this, and still, to this day, he talks about it.

Conor, dude, this isn’t a hot tub with tipsy co-eds filming Girls Gone Wild.  This is a family-friendly event.

Put your pants on!


An oldie but a goodie.  Aidan got a kick out of this.

It's a Good Thing His Dad Knows Math

It took Jim a few minutes to figure it out, but Conor wanted him to write a multiplication table so he could start doing division?  I think?  (I dunno, I was an English major. It was some table full of numbers.)

No Room at the Inn.

I’m feeling very melancholy today.  And I can tell that this post is not going to be one of the easy ones.  I’m used to the words just falling onto the page but I’m really struggling here.

Quite frankly, I don’t know where to begin.

I’ve been following this Merry Christmas/Happy Holidays brouhaha somewhat.  I don’t choose to, but if you’re on Facebook half as much as I am (I’m an addict), it’s unavoidable. 

I’m pretty sure Bill O’Reilly started it to jack up his ratings, but I can’t swear by it since I don’t watch the man’s show and I don’t have the time to look it up on YouTube.  

(I have a kid with autism, you know. It’s quite time consuming. Plus the blog and shopping.)

It caught me off guard, a few posts like (and I paraphrase) “You can’t tell me not to say Merry Christmas” and “This is America and I celebrate Christmas”.  I couldn’t figure it out.

Who’s telling whom they can’t say Merry Christmas?  Have I missed the memo?

This was my favorite.  I think this person must have been drinking because it makes no kind of sense.  And I quote, “Merry Christmas christmas tree christmas tree Merry Christmas! If your offeneded go f**k yourself cause I pledge allegiance to the one and ONLY flag of the USA!”

Scratch that, I think he was smoking crack.  It’s the only explanation.

This whole thing kind of shocked me. Who cares if the sign at the store says Happy Holidays?  If there’s one thing having a child with autism has taught me, it’s that life is too crowded to worry about imaginary slights and getting worked up into a lather about every little thing.  I’m too exhausted for that. 

We focus on the big things like poop and tantrums and IEPs, and everything else is just white noise.

Maybe these people need to borrow my kid for a few hours.  That’ll take their mind off the holidays Christmas right quick.

But in the end, I think that what bothers me so much is this—

If there’s not room for Happy Holidays, is there room for my son?  If someone won’t tolerate a simple Happy Holiday instead of a Merry Christmas--such a small thing, really--how will they tolerate Conor’s unpredictable, sometimes volatile behavior?

Would they be empathetic and compassionate or will they say “get the f*ck out of my way” when he butts in line or “I have a belt in my car” when he’s having a public tantrum?

(By the way, I never let him butt in line, but he often tries.  No patience. I have, however, offered to kiss many a stranger in gratitude for kindly letting us in line ahead of them when they notice his disability. So far, no takers.)

Would they help me out of a tough situation with my child or will they tell me not to let the border hit my ass on the way to Mexico because I can't control him?

Is there room in this world for my son? I'm not sure what I would do if this were my neighbor, instead of a picture someone seriously posted on their Facebook page, with other people "liking" it.

I'm not sure what I would do, but I certainly wouldn't call them "Christian".

That Ain't Old Spice

It took me a few minutes to figure it out. (I'm not as bright as I used to be, I guess.)

Conor and I were in his bathroom, getting him ready to take his shower.  He's pretty independent, but still needs prompting to put his clothes in the laundry basket, to lift the toilet seat, and to stay on track.

"Mommy!" Conor squealed in his happy, snuggly voice, and came over to give me a hug, half undressed.

Sniff, sniff.  What was that smell? I thought as I hugged Conor back.  I looked at the laundry basket.

Did Jimmy put his running clothes in the kids' basket?  Why would he do that?

Then I looked down at Conor.  Well, not really down since he's only three inches shorter than me, but when I turned my nose down to Conor, I figured it out.

His pits stank.  Stank-y stank. End-of-the-day working-hard-in-the-fields stank.

Oh. My. God.

PUBERTY!!!!!!!!!!!!!!!!!

A Quarter For Your Thoughts.

Last night, my husband and I got a stern lecture at the dinner table.

“You know, you two,” my nine year-old Aidan began in a serious voice.  “In the past few weeks, I’ve heard some words out of you both that we’re not supposed to say.  I think that every time you say a curse word, you should pay me a nickel or a quarter.”

I was dumbstruck for a moment.  And then I thought…

What the hell are you talking about Aidan?  (Damn, that’s a quarter.  Shit, that’s another quarter.  WTF, now I’m up to 75 cents? A dollar?  You gotta be kidding me!)

If you’ve read any of my blog, you’re probably wondering the same thing I am right now. 

How is this MY child?  Did aliens implant him in my uterus to be born to torture me?

(Oh wait, no, that’s Conor.  He tortures me.  Aliens must have implanted Aidan to try to keep me on the straight and narrow.)

I often wonder, though, if Conor would still be my “difficult” child, even if he didn’t have autism.  Was he just born a challenge, destined to torture me?

After all, the stories of my husband’s older brother are legion.  I think my mother-in-law did back flips all the way home after dropping him off at college. He just fought her every step of the way.

Of course, today, Pete is perfectly lovely and an accomplished neurologist, but he certainly gave his parents lots of heartburn getting there.

I wonder… would Conor have been so strong-willed and determined if he didn’t have autism? How much is the disability, and how much is just his natural personality? Does one or the other singularly make him so challenging, or is it the interplay of both?

Does he not understand what we want him to do, is it something his body just can’t tolerate, or does he just not want to do it? 


Is he just being persnickety? 

Sometimes it’s impossible to tell.

Would Aidan be so easy if he hadn’t had to learn to be flexible and subsume his own wants and needs to the demands of a disabled older sibling?  Or is being a people pleaser and a nurturer his nature? Is he just hard-wired to be anxious or does the dysfunctional chaos of our family stir up fears and worries? Both?  Neither?

I guess it’s pointless to continue questioning the ‘woulds’ and the ‘what –ifs’.  It’s truly impossible to tease out where Conor’s autism ends and his nature begins, at least for me.  After all, it’s a global disability, affecting every single, even infinitesimal aspect of his life. 

He is never free of it. (And in many respects, neither are we.)

It’s a filter for Conor's every interaction with the world, his environment, and our community. It affects his brain, his reasoning and learning, his gastrointestinal system, his immune system, his musculature, fine and gross motor skills, his physical, mental, and emotional development.

 

Are autism and his nature spliced together at every possible point, or is there some remote part of him that remains true to his born self, free from the disability? Is that even possible, with a disability that affects your brain? 

There are many days with Conor that leave me feeling like all I have are questions and very few answers.  I can answer you this, though. 

I’m not paying Aidan any damn money. But I’m sure the charity that we’ve chosen to receive funds from the “swear” jar will be quite happy with the proceeds.

Wake-y wake-y eggs and bac-y

Every morning, Conor wakes up full of energy, skipping and jumping and bouncing balls and screeching at the top of his lungs.

It can be four o'clock in the morning, or it can be seven o'clock, but he is up and full of ideas and things to do and places to go and tokens to earn and songs to download and videos to watch and treasure chest time to earn and most importantly, balls to bounce.  Loudly.

My Aidan also wakes up full of energy and gusto, but he's learned to park himself in front of the TV to give me time to acclimate to the fact that I'm upright and my eyes should be open.

(At least on the weekends.  On school days, I'm the first one up and ready, with a coffee cup glued to my right hand. School ROCKS.)

"Aidan," I said this morning over our cereal bowls, "where do you and Conor GET all this energy?  I want some of that!"

Aidan leaned over to me and conspiratorially whispered in my ear.  "Sugar, Mom.  Sugar."

The Bible of Math and the Cal Ripkens

Conor kneels before his bible--a Grade 4 math workbook.  He bought this on his own, by his request,  with his own money, and does it for fun.  Craziness.  (Forget word problems, I don't even make change.)

All under the watchful eye, of course, of the autographed jersey of his holiness Baltimore Oriole Cal Ripken Jr.

Conor calls the Baltimore Orioles the "Cal Ripkens".  As in, what's your favorite baseball team, Conor?  The Cal Ripkens.

Behold, the workbook.