The Many Faces of Me

This is me.  Well, it's me with help from PhotoShop.

Eleven years of coping with my son's regression and subsequent behavior challenges 

has made me stressed-out and weary. I am, quite frankly, exhausted. 

I'm 42 years old, but feel 80. Sometimes, anyway.

More than I'd like.

To cope, I drink Pinot Noir and eat stinky cheese. And write this blog.

All three are yummy.

My husband and I used to go out all the time. But now it's really hard to find

a babysitter that can manage Conor on their own. 

And this autism thing is expensive. So we stay in a lot.

(I keep telling him to cut his hair, but he likes it longer.)

I know I should exercise more, that it would help relieve stress and tension. 

Maybe it would even make me feel younger.

But I hate exercise.  I read athletically instead.

Because you can drink wine and eat cheese while you read a good book, 

but it's really hard to do those things on a spin bike. I wouldn't recommend it.

Some days, I'm so mad at autism, I just want to scream at it to bloody sod off 

and leave me and my son and my family alone.

I often do, I suppose. Scream, that is.

But mostly, I just try to hang on and make the best of it. Because if you

don't laugh, you'll just cry.

And what fun would THAT be?

Like Corn On The Cob

Late this afternoon, during his tantrum, 

my son bit his arms from fingers to biceps 

as if he were devouring an ear of sweet 

succulent Silver Queen corn on the cob 

dripping with butter and sprinkled with salt

on a hot day in July.

What Are My Options Again?

Lately, I’ve started talking to Conor about his options. (You know, options to having a temper tantrum.)  Choices. 

It all started because we would ask Conor to pick from “options” of activities.  Left to his own devices, he’d inevitably pick an obsessive interest that could lead to problems.  So if you ask him what activity he wants to do, today he might point to himself and reply, “What are Conor’s options?”

We’re fortunate that he has the receptive language and the cognitive development to comprehend this.  We are not so fortunate in that it doesn’t really seem to help when he can’t get what he wants.  In the heat of the moment, ingrained behavior, anger, and frustration seem to overwhelm his rational mind. (I always picture it like a red tsunami in his brain, blotting out reasonableness and his affectionate nature.)

But, the process makes me feel better--more proactive--and maybe, just maybe, one day it will stick.

Recently, Conor’s given my husband quite a few fits when he doesn’t have enough money to buy what he wants on his earned community outings. 

My boy’s a shopaholic, so the NBU put him on a budget.  It’s been so helpful.  He asks to buy something. We reply that, certainly, he can.  If he has the money in his wallet.

Except now he’s started to ask me—“Mom, what’s YOUR budget?”  

“I don’t have a budget, Conor.  Don’t tell your dad.”

So I started anticipating problems before outings.  And I would try to think of solutions.  (See Conor?  You don’t have to get upset.  Mommy’s got it all figured out FOR you.)

 What if he didn’t have enough money in his budget to get what he wants?

What if the store was out of what he wanted?

What if he couldn’t find one he liked?

What if the store went out of business since our last visit?

What if, what if, what if?

Last week, Conor requested to go to the local mall.  Turns out he wanted to buy himself some new threads.  Hey, a guys gotta look good, right?  

Lookin' good

Conor wanted to go to Gap Kids and buy a new collared shirt.  Because the 10 polo shirts mouldering in the bureau just weren’t fly enough, I suppose.

Conor loves to wear “collared” shirts to school.  (He thinks he has to, since his brother is required to wear one to his school.)  He pairs them with his sweatpants or athletic shorts, which can wind up looking quite comical.  What can I say?  He’s fashion geek, not fashion chic. (And he can’t handle buttons and zippers very well.)

So I sat down with him to review his options if things didn't work out the way he planned in his mind. Sometimes half the battle is just figuring out what he expects.  It's not like he tells you ahead of time. 

It didn't matter that I was taking muscle with me. (I try not to go on outings without my husband or a therapist.)  I want Conor to learn that his behavior is a choice, just like choosing what shirt to wear or what birdhouse to paint.

And so, I sat with him and wrote out our options.

I wish this would really work.  

I wish I could sit down with my son, like I sit down with his brother, and talk about his behavior, and his feelings, and think about what it all means.  It would be so nice to outline for him all the wonderful things he could be doing if he could just behave himself.  And by behave, I mean not have a tantrum.  I’m not expecting perfection. I don’t ask for typical.

I’d like to sit on the bed next to him before he falls asleep and tell him what he did that day that was really great and what he did that could he work on, and have it mean something. Have an impact. A real heart-to-heart. A tête-à-tête. A meeting of the minds, as it were.

I wish we could put our heads together, make a plan, and roll with the punches if it doesn't work out.  Maybe one day.  Maybe.  A girl can dream, can't she?

What? I Have A Little What On My Face?

Well, in the interest of full disclosure, I feel that I have to admit something.  I hate having egg on my face, unless, of course, it's part of some sort of exotic facial treatment to make me look 23 years old again.  But, it must be done.

Last Friday, I was in a lather about a letter we received concerning our application for state funds. These funds would help support Conor when he becomes an adult.  I was like a little yippee chihuahua foaming at the mouth and spinning in circles about the eligibility portion of the process.

Yeah, that's me.  Except I was foaming at the mouth.
I was like a Chihuahua Macchiato

Anyway, the very nice lady (who I had to call twice, ahem) interpreted the government-speak for me.  (They really need to teach that as a second language in high schools.  At least a January term in college.) 

She gently reminded me that she had mentioned in the interview that the letter might be confusing.  I suppose I was too enamored with her compliments about my organizational and photocopying ability to remember.

They weren't saying Conor didn't have a developmental disability.  They were  saying that he was too young for one category of services, but that he WAS eligible for other (lighter) services (and sorry, there's no state money for that category now so you're out of luck).  And they can't say they don't serve children, because they do, but only children in the most urgent crisis and that, thankfully, is not us. I should call back if we do fall into a crisis situation, but, otherwise, work with school personnel when he turns nineteen.

Well, why didn't they just say that?

Maybe they should have a box you can check that says--

While they're working on it, they could add a box that says--

And maybe they could have a disclaimer:

                                                                                  

So the next time I apply for some government services (if there IS a next time), I will sit down and meditate for a few minutes before I actually try to read the information.

But I'm not wrong to worry.  I hope you had a giggle at my expense (I certainly meant for you to), but the waiting list for services for individuals with developmental disabilities is long.  Longer than the lines at Disney World in June, ladies and gentlemen.   Read on while I go wipe my face off.

From The Arc of Maryland web site:

What is the Waiting List? http://www.arcsomd.org/faqs.php#13

                   
 This list consists of 16,000 individuals with developmental disabilities who are eligible for Developmental Disabilities Administration (DDA) Community Services Waiting List but for whom services are not available. Community Services include residential, day habilitation, employment, family and individual supports. To read more about the Waiting List and the efforts to get funding, visit The Arc of Maryland's website Be counted - Sign the Waiting List & Youth Transitioning Petition today!

Wrestling The Bear

Every school morning, Aidan (my typical kid) and I are at the school bus stop by 7:10. I rise early, exercise, shower, make-up my face, and fix a wholesome breakfast for the both of us after I empty the dishwasher and feed the dog. 

Pffffft, yeah, right.  The reality? I throw on the same tired, grey, Old Navy sweats everyday, yank on a black knit cap to hide my bed-head, and throw some cereal into a bowl for Aidan while I mainline coffee.  (The dog starves and keeps his legs crossed until I return.)

We're out the door at 7 sharp and jump into the car.  (The bus stop is about a half mile from the house.) My husband hangs out at home with Conor.

This morning, as Aidan and I sat in the car, I pulled down the sun visor to look in the mirror. If I look too rough, the bus driver asks me if everything's ok at home.  (He gets offended if I don't get out of the car and say hi to him as Aidan runs up the steps.  I know, don't ask. Nice man but a Nosy Nelly.)

"Do I look as tired as I feel?" I asked Aidan, glancing at him out of the corner of my red-rimmed eyes. The annual spring pollen-storm isn’t helping me any.

"You look like you wrestled a grizzly bear," he replied.  "You look like you won, but... still.  A bear, Mom."

Don't you just love that kid?  He makes me laugh every day. You bet your ass I beat that bear, babe.

It's no secret. Raising kids involves a measure of sleep deprivation at many points in their lives.  I'm sure there's a mom in China right now falling asleep at her station at Foxcom making my next iPhone.

I’m not going to bore you with the details of Conor’s sleep habits.  Plenty of parents of children with autism have shared their child’s abysmal sleeping patterns. Suffice to say, Conor stopped sleeping through the night when he regressed just before the age of two, and didn’t sleep through the night again until he was 9 years old.  Yeah, that’s like having a baby for 7 years straight.  Not as bad as a newborn, but not as good as a typical toddler.

And I don’t mean get up for a minute, gimme-some-juice-Mommy, and go back to sleep.  I mean, awake at 2:30am and up.  For the day, up. (Totally brutal when I was working full time.)

I Ferberized the hell outta him, with zero luck.  (For those that might not know, this is the “cry it out” method.)  He outlasted me.  It’s no surprise, really.  His atypically-developing brain just didn’t know how to do the sleep thing.  Plus, the armchair in the hallway was super uncomfortable and after three weeks straight, my back was crying "uncle". 

So we medicated him to get him to go to sleep.  (Staying asleep is a whole other story. We resorted to taking turns sleeping with him.)

During the bad years, Conor would wake up in the middle of the night and be aggressive.  I don't have much to say about that (not thinking about that, la la la la), but worrying that your older son is going to attack your younger son in the middle of the night isn't conducive to a good night's sleep.  Just ask your doctor.

So, tired and me, we go a long ways back.  Today, Conor sleeps as well as a toddler. (A toddler on medication that makes him sleepy.)  He sleeps through the night, most times. He never sleeps in, even on weekends and vacations. If he goes to sleep at 9:15pm, he gets up at 6:20am.  If he goes to sleep at midnight, he gets up at 6:20am.  If he goes to sleep at 2am, he gets up at 6:20am.  You get the picture.

It’s funny, though.  Now that Conor has pretty much conquered his sleeping issues (for the time being anyway, knock on wood), I seem to have developed my own.  His disability generates a lot of things for me to worry about, I suppose.  And the only free time I seem to have is in the middle of the night.

And so, for more nights than I can count, I wrestle the insomnia bear.  I lose more often than not, but occasionally, I beat the bear.  And the next time I don’t?  Well, I guess that’s what Visine and sunglasses are for.

And coffee.  The nectar of the gods.

Scary lady

The Jugglenast

After Conor had his REALLY BIG BURST, you all know that I had, um, a little, tiny, mini nervous breakdown for about 3 hours.  Ok, I had a crying jag coupled with some self-medication. Nothing to write home about, I suppose.

I spent much of the next day hungover in a fog, trying to figure out why he went 39 days without a tantrum and then just couldn’t hold it together over… nothing.

Over nothing.  Who does that? 

(Ok, individuals with autism do that, it's a rhetorical question. Yes, supermoms, I know there's a reason, he just can't communicate it to me.  I blame the communication disorder.)

In my mind that Sunday, I turned all the parts of Conor’s life over and over, like a mystic turning over her tarot cards.

Was it a medication problem?

Maybe something that was working isn’t working anymore. Time for something new? Increase a dose? Decrease a dose?  Time the doses differently?

Perhaps his stomach bothered him or caused some generalized anxiety? 

Maybe he has to poop; when did he last poop...if you're an autism parent, you know how important poopage can be. Gut/brain connection and all that jazz.

Did we do something wrong with the behavior protocol?  

No, no, we followed the protocol.  He has all his tokens here.

Maybe he got some bad bacteria in his gut?  

Dear Lord, no more of that, thank you.  Had enough of that. If I don't consider that, it won't be true.

Did something happen at school that he can’t communicate to us? 

He could be stewing about something that occurred at school the day before.  It’s happened.

Or our fall-back theories—a full moon or just some really bad karma?  

Dammit, I TOLD Jim to be nicer to my mother. Paybacks are hell.

You know, it’s not a useless exercise, this review, but sometimes it feels pretty hopeless.  The iterations can seem endless, infinite.  The medication part I find particularly vexing. Is behavior linked to the medication or the autism?  The anti-psychotic or the wacky gut? The anti-hypertensive or the communication disorder?  Too much SSRI?  Too little?  More probiotics or different probiotics?

All too often, I feel like a wobbly gymnast on the balance beam, trying hard to just stand there in one spot while I juggle all these balls. I juggle quite badly, to be sure. If it could be a video on YouTube, Tosh would invite me on Tosh.0 for one of his web redemptions.

Here, I drew it for you. I call it The Jugglenast: combination Juggler and Gymnast--

I broke out each of the medications (Abilify, Prozac, Intuniv) because
any one of them could cause something to go kerfluey.
That's what it says on the sheets I got with them--"kid could go kerfluey".
Lovaza is prescribed fish oil. Yeah, it's that important but it wouldn't make him go kerfluey.
KKI=Kennedy Krieger Institute
I even signed it, so you know it's an original.

It’s bad enough that I have to juggle all these damn balls, but to have to do it on a balance beam too?  It just doesn’t seem fair.  I can’t afford to drop even one of these balls, because then I’d need at least one hand to pick that one up and have you ever tried to juggle twelve balls with one hand?  It’s really, really hard.

And then to try to climb down off the balance beam, pick up the dropped ball (juggling all the while), and climbing back up again?  Damn near impossible.  No, dropping a ball isn't an option, I suppose.  

I'll just have to keep juggling harder. 

I'm Sorry, You Said What?

Recently we applied for state-funded services for Conor.  Oh, not for services today, for services when he becomes an adult. 

"You have to apply before he's fourteen," everyone told me. "FOURTEEN," they would emphasize, eyes wide open and pointing at me.  Ok, ok, I get it.  Fourteen.

So I applied when he turned twelve.  (That'll show them. BEFORE fourteen, boo-yah.) 

Of course, we were then waylaid by his 5-month inpatient hospitalization at the NeuroBehavioral Unit. (They actually want to see the kid, I guess to ensure that he really exists. Ok, I get that, quality control.) So our application got in at age thirteen.  (Still, boo-yah.  One year early, baby.)

Finally, I fax all the required information--the completed application, the neuropsychology reports, the discharge papers from Kennedy Krieger's NeuroBehavioral Unit.  Hey, I figure, full disclosure.  If they're going to be able to fund supports, they need to know what kind of crazy behavior they're dealing with.

We set up the interview.

You know, the administrative person who interviewed us couldn't have been nicer.  She treated Conor with respect and a wonderful attitude, was open and friendly toward us, and complimented me on my organization. (Yeah, that's right, I'm organized like that. I can copy and file like a champ.  I am the Mike Tyson of copying, you bet.)

Most importantly, Conor sat quietly listening to his headphones, answered her questions when she asked (pulling the headphones off his ears when I tapped his shoulder of course), and didn't bite anyone. (Can I get a fist bump for that? Hells, yeah!)

Awesome, I thought to myself.  I am ALL OVER this transition-to-adult shit. I got it covered.

We go home.  We muddle through the next couple months, and I don't give the application a second thought. I put the manila folder on the rack in its appropriately filed but visible place in the Incline Vertical Organizer on the right-hand side of my desk (with my other "active" files, uh huh) and that was that.

Last week, a big fat white envelope came in the mail with the administration's stamp on it. "Aha!" I crowed to my husband, waving it over my head. "Here's the letter!"

It was a fat packet.  Everybody knows that a skinny letter means you’re rejected but a fat one?  Gold, baby. Gold. All OVER this.

I quickly scanned the first page.  Now, I took about four years of French so I can muddle through that.  But government-speak?  I’m not familiar with that at all.  I hire an interpreter to try to figure out my tax return for Pete’s sake.

Dear Conor, the letter began.  Gobbeldy-gook, gobbledy-gook, blah blah blah, yadda yadda yadda… the government agency “has determined that you are not eligible as a person with a Developmental Disability, which is also referred to as DD eligible… it is recommended that you be re-evaluated for Developmental Disability as more tests become available.” And it was in bold letters to make sure that I saw it I suppose.

Holda, wha? They cannot be saying they don’t recognize him as someone with a developmental disability, surely.  Seriously, it’s right there on his neuropsychology report he had when he was nine and then eleven.

AUTISM SPECTRUM DISORDER

It’s right there on his discharge papers from Kennedy Krieger Institute.

AUTISM SPECTRUM DISORDER

She met Conor.  He has tons of skills but it ain’t like he’s passing for a typical kid.  Two seconds with him and you can tell.  He has

AUTISM SPECTRUM DISORDER

My husband looked concerned at the scowl on my face but he really looked nervous when I started growling.  

I understand not having the funds.  I understand them saying he’s not at the top of the list. (Part of their prioritizing is whether or not your family is in crisis and, despite Conor’s wicked behaviors, we are not in crisis.  At least, not anymore.)

I don’t really understand this.

I think, perhaps, I’m just not understanding the government-speak?  I think, maybe, that I’m not reading this correctly because they go on to deny other services for lack of money, lack of crisis, and so on. So maybe they're NOT saying they don't believe us, and the doctors and my son?  Maybe they're just saying he's not eligible because... because... well, because.

I don't know. They say something about a "young age" and "lack of functional life skills."  Yeah, well, duh, I applied before he was fourteen and I don't know WHAT they mean about functional life skills.  Yes, he lacks functional life skills.  Like wiping his own butt and tying his shoes, for example.

I so seriously don’t have time for this.  (Yes, I have time to write about how worked up I am about it on my blog but I don’t have time to call a government agency to argue with them about my son’s eligibility.  I get the irony. What can I say?  I have a low frustration tolerance.)

Of course, of course, I’ll have the time.  I don’t have an option.  I’ve already started to work my network to help me figure out what to do and I’ve called the phone number on the piece of paper and left a message. Maybe it's a quick, simple explanation.

But I don’t have time for this.  Don’t they understand?  He’s thirteen and a half now.  The clock is ticking.  It sounds like it’s saying… fourteen, fourteen, fourteen, fourteen.

Just A Story

Tomorrow we introduce a new protocol to Conor, and I'm pretty nervous about it. Well, it's actually not totally new, but it's a change to an existing one and even a change makes me anxious.  (Of course, it's already well established that I'm an anxious person to begin with.)

Many times, Conor's tantrums begin with a lot of perseverations about an obsessive topic. (Perseveration is the "repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder". 


Yeah, organic disorder.  And all this time I thought organic was supposed to be good for you.)  

Anyhoo, you can be obsessive about something and not talk about it all the time... Conor.  
(Right?  Right? Right?) Denying the obsessive request or ignoring the perseveration can lead to tantrums, like the one he had on Saturday night.


No, Conor, for the last time, you can not burn a cd for Gabby Smutz at school!!


Ok, I didn't say it like that (obviously), but I did say no to the request and the firestorm ensued. (Yes, I know, supermoms, that this request sounds sweet and nice and generous, and oh, isn't that so cute that he has a girl he likes, he wants to make a mix tape for her but trust me.  We've been down that road before and it ain't pretty.  I'll explain why at a later time.)


So... I was supposed to put together this social story to explain the changes to Conor but I was too busy jet-setting about the planet with Brad and Angie and the explosion happened before I got my act together. (Designed by Carol Gray in 1991, social stories are short stories "written or tailored to an autistic individual to help them understand and behave appropriately in social situations." We use them to explain things that will happen as well, so technically, they're not truly "social stories." Just a story, I guess.)


I emailed our behaviorist about the tantrum amidst my tears, and she asked me back about the social story.  Oh, yeah.  That.  Um, I did kind of maybe sort of say I would put the social story together perhaps maybe?  You know, after Brad and Angie and the kids left?


Anyway, I finished the social story and I thought that I would share it with you.  It's pretty self-explanatory.  Conor will sit down with an adult and read through it once or twice a day to really cement the message.  It will be coupled with the new protocol and token board (taking out the old iTouch-specific token board).


This, of course, does not change the behavior protocol and token boards that specifically address the aggressive and self-injurious behavior. Oh, good golly, no, wouldn't want to mess with that, no sir.


Sorry, you might want to get your reading glasses out.  Couldn't make them any bigger with my cheap scanner. Conor's behaviorist on the NBU created a template for the stories, and I just change the text and the characters.

Say Hello To My Little Friend

On Saturday night, Conor had a burst.  A tantrum.  A rage.  It had been 39 days since his last one. (One more day and I could make a biblical joke.  The irony.)

Ok, let me be honest here.  (If I’m not, what’s the point of the story, really?)

Conor's tantrum was a 45 minute shitstorm of epic proportions that left all three of us bruised and battered. I emailed our outpatient services provider after it was over, and here’s how I described it to her--

kicking hitting biting pinching punching eye gouging head banging scratching property destruction disrobing eloping

I don’t bother with punctuation when I email these things. Makes quite an impact, don’t you think, avoiding the commas?  Too time-consuming, anyway.

Here's just a quick taste of what it felt like. You wanna play rough? Ok. He really gets going around 0:20.

In any case, after the firestorm subsided and my husband got Conor to sleep, I quickly got started.  I poured myself a glass of wine, and then I proceeded to cry.

Oh, I didn’t just cry. You would have been so proud of me.  I bawled and I bawled and I bawled and I bawled until I got the dry heaves.  Then I drank more wine and I settled for quietly weeping because I do NOT like to vomit and I didn’t want my husband to hear me. (Crying, not dry heaving. He can hear me dry heave, that's ok.)

I like to pretend I’m all strong and shit, you know.  I am autism mom, see me cry hear me roar.

And I got drunk.  Well, I drank half a bottle of Pinot Noir and then took my antidepressant, which makes me FEEL really drunk and well, isn’t that the point, after all?

You would think, wouldn't you, that after all these years of these truly awful tantrums that I'd get used to them.  That I would be unfazed, cool, calm, like a cucumber.

Nope.  Oh, I pretend I'm all bad-ass.  "I heard Conor had a tantrum," my sister said to me on Sunday.  "Yeah, whatev," I replied, all James Dean.  Or, since I'm a woman, like Linda Hamilton as Sarah Connor in The Terminator. She wasn't fooled, but she didn't press it.

Yeah, like that.

I try to be strong.  I try very hard. But really, I'm starting to question whether I'll ever get used to these firestorms.  Conor's had behavioral problems now (read: tantrums) for almost half his life.

(I'm including the years before he regressed, of course. Since he regressed, well, over half the time, realistically.)

So I just wonder... am I ever going to get over it?  Should I be able to? Be able to just wipe my brow, look at my husband, and just say... whew, that was a bad one.

What would it mean if I did?

That's Not Ok!

“TURN THAT THING DOWN!  IT’S TOO LOUD!  THIS IS THE BUSINESS CENTER, THAT’S NOT OK!  THAT’S NOT OK!  AREN’T YOU LISTENING TO ME? THAT’S NOT OK, THAT’S NOT OK!”

I just blinked at the middle-aged, spectacled man shouting at me in the resort business center. Of course I heard him.  How could I not? He must be a Very Important Person to begin a conversation with a stranger by shouting and gesticulating wildly. Only a Very Important Person would do such a thing, I suppose.

Conor and I had come to the resort business center for his “Treasure Chest” time throughout our Spring Break trip.  He earned time on a computer with his good behavior, and this was our last visit to the center.  He liked to play pbskids.org.

Conor liked to play with the volume very high.

He didn’t set it on the maximum volume, but I suppose not many Very Important People bother with the sound on the business center computers.  I tried to find the volume the first three days, but so rarely was anyone ever actually in the center with us, I stopped trying. Volume of music and the computer can be a trigger for a temper tantrum and why mess with fire in a strange place, without back up, I thought?

It didn’t help that the volume was somewhat variable based on what Conor was playing.  Some videos were loud, some games were quieter.  It was 30 minutes of Facebook and online window-shopping time for mommy, and 30 minutes of pbskids.org for Conor.

Finally, after the shouting diminished (but not the gesticulating), I calmly and in a quiet, low voice replied, “Of course I can hear you.  This is a resort business center, not a library.  My son has a disability and I’m doing the best I can. We only have five more minutes anyway.”  And I reached over and good karma shone upon the volume button on the desktop and lo, I turned the volume down.  And by the same good karma, Conor did not utter a peep, except to inquire, "Why is Mommy turning the volume down?"  Because it's too loud, I replied.  And held my breath.

And as we were walking back to our room in the hot Florida sunshine, it occurred to me.  Sometimes, it’s not about my son having a disability.  Sometimes, it’s about someone else just being an asshole. And no, that's not ok.

My Little Rock

“Aidan, didn’t your dad tell you to go read a book?” I asked the other night, putting my hands on my hips in that age-old “mom” pose.  “So why are you watching TV?”

I had discovered him curled up in his pajamas, freshly showered and watching television on our bed.

He immediately looked guilty, turned off the TV, and went to get ready for bed.  That’s the routine—shower, brush teeth, read, bedtime. It’s nice that he’s so independent.  He doesn’t need a prompt for every small step. (Except when he does.  He's only 9, after all.)

I found him in the bathroom a few minutes later, trying not to cry while he flossed his teeth.

“What’s wrong?” I asked him, surprised.

“I’m sorry to be so difficult, Mom,” he choked out.

“Difficult?  What do you mean, difficult?” My eyebrows shot up. 

“I disobeyed you and I’m sorry that I’m so difficult,” he replied with tears in his eyes.

“Difficult?  You’re not difficult.  Your brother, he’s difficult.  You, you’re easy-peasy, like a little butterfly,” I said.  

“As a matter of fact, I’m going to call you that from now on.  My little butterfly.”  I tried to tickle him, but he brushed my hand away.

Seriously, I thought to myself.  What kid doesn’t sneak off to watch TV when he’s supposed to be reading?  

Ok, I didn’t, but I’m a dork. I love reading. And I feared the wrath of Fran. (That’s my mom, if you haven’t guessed.)

“Don’t call me that, Mom,” he said.  “I’m a boulder.  I’m difficult.  I’m hard as a rock.  I’m a tough kid.”

No, you’re not, I thought to myself.  You’re my little butterfly.

Right now, Aidan IS an easy kid. But I stopped reassuring him.

So, of course, I have spent the last few weeks mulling this over in my tiny, addled brain.

Does he want to be difficult, so he can get as much attention as his disabled brother? 

Let’s face it, his brother gets A LOT of attention, for both good AND bad behavior. Conor’s therapist, his 1:1 aids, teachers, family friends, and, of course, his parents all cheer every little achievement Conor makes.  The bad behavior, of course, is nearly impossible to ignore.

(What about me? Aidan asks sometimes when we praise his brother for a seemingly inane act.  

Am I a good traveler too? Am I being patient?  

Did you like my piece of art? 

I throw the ball pretty hard too. 

I can help set the table. Let me help, he says, I want to help.)

What does his desire to be considered “difficult” mean?  Does Aidan desperately not  want to be difficult but is struggling to achieve an ideal perfection that is, ultimately, totally NOT achievable  by any human being? You know, to not make any waves since he comprehends the stress that my husband and I are under?  But what kid can do that, behave like an angel all the time?  That’s not normal. Is he seeking a level playing field with his brother or does this signal some sort of self-esteem problem that I need to start addressing?

My father says I’m over-analyzing the whole thing.

Who, me?

Oh, balls.

“Do you have balls?” I asked my husband as we trudged up the stairs behind Conor.

“Do you mean that physically or metaphysically?” he chuckled.

“Ha!  Maybe a little bit of both,” I giggled. “The tennis balls, dear.”

Last week, we took Conor on a four-day jaunt to Ft. Lauderdale, Florida for his Spring Break.  

You know the scene.  Bikini-clad women glistening with sunscreen, fraternity brothers with rock-hard abs, convertible Jeeps cruising up and down the Avenue pumping out Katy Perry tunes, hot sun, cold beer, late nights, casual sex, and naps on the beach.

Oh wait, no, that was just one of my flashbacks from college. My bad.

In my experience, taking Conor on Spring Break to Ft. Lauderdale requires three types of balls:  a basketball (his request, never used), tennis balls (he likes to play even though he has absolutely no backhand, so sad, really), and a big pair of cojones. 

(I borrow Jim’s cojones when I need a pair.  We’re married so technically they’re mine, right? At least, half the time. Yes?)

Taking Conor on vacation is not for the weak, after all.

Two years ago, our trip to Florida culminated in drugging Conor to get him on the plane home.  (Unfortunately, I didn’t bring drugs for me so I had to wait until we got home. Damn those drug-sniffing dogs and their olfactory prowess.) 

Two days of near-constant aggressive and erratic behavior took a toll on all four of us.  He did wind up punching the airplane window a few times but it held and we didn’t wind up talking to Matt Lauer on the Today show the next morning so that was good.  After the punching, he passed out fell asleep.

Last year, our trip to Busch Gardens in Williamsburg, Virginia (no plane, thanks, enough of that) ended in my son smashing his fist on another family’s breakfast table on his way back from the restroom with Jim, scaring the bejesus out of everyone.  The whole restaurant fell silent. “That was scary,” the mom said to her daughter.  We quickly fled to the car after I threw money on the table, avoiding everyone’s eyes.

So despite all of Conor’s gains since being discharged from the hospital, I was a little nervous, you could say.  We decided to go back to the same resort in Ft. Lauderdale since it was familiar, Ft. Lauderdale has a Panera and a Chik-Fil-A, and the small resort was literally 15 minutes from the airport. They didn’t have Conor’s face on a “Wanted” poster, so I figured we were safe.

I packed up the house into a few suitcases. (You think I’m kidding, don’t you?) I needed at least three bags—one with the basketball, one with the tennis equipment, and the third for Jim’s cojones. We took the first flight out of Baltimore, barely making our flight after waiting in endless lines of fellow Spring Breakers to drop off our bags.  (We carried the cojones on the plane with us. You definitely don't want to get on a plane with Conor without your cojones.)

I’m relieved to report that things went much more smoothly this year.  Oh, we had upsets, but they mostly involved stomping feet, caterwauling and rolling around in the sand. (And that was just me when they closed the poolside bar.)

Of course, these upsets really revolved around waiting for the balls that we didn’t bring with us, namely ping pong balls and a volleyball. Waiting is hard, especially for a teen with autism.  (Where IS that waiter with my drink?) But all we had to endure this time, thanks to an awful lot of luck and a ton of hard work, was the pitying stares of other parents, which are their own hardship, I suppose.

So it was a success. And next year, I know to put three more balls on the list… ping pong balls, a volleyball, and my own pair of cojones. I’m tired of sharing with Jim, and I think I can find a cheap pair on Craig’s List. A brass pair that I can hang from the tow-hitch on my car.

I have to recommend the Lago Mar Resort in Ft. Lauderdale, FL.  It is an older resort, small, but it's right on the beach, very close to the airport (you can see the planes taking off from the beach), and the employees there could not be nicer. Most of the clientele have younger children.