Happy Birthday To Me

Today is my 43rd birthday, and Conor got me the same exact thing this year that he gave me last year.

I'm not sure if it was because he was overwhelmed by the Thanksgiving holiday in general (there's so much to do to prepare), or whether he just couldn't come up with something unique. Who knows? 

This year, though, he gave it to me one day early, which was a little surprising but not unexpected. He just couldn't hold it in anymore, I suppose. He has trouble keeping these things to himself.

I had the same reaction this year as I did last year. No, no really, you really shouldn't have. No, really, I mean it.

There's something extra special about the very public grand mal tantrum. It adds a little spice, a little kick to the otherwise mundane spectacle of my almost-14 year old going ape shit. I like to think of it as giving back to the community. Otherwise, what would they have to talk about with their friends and family for the rest of the day? The beauty of the fall foliage? How très ennuyeux.  Très bourgeois.

Trees?  Yawn.
But this tantrum I saw? Amazing.

No, with this tantrum at the very crowded nature center in the county, Conor was able to entertain a whole host of nature-lovers as my husband and I struggled to restrain him both out-of and inside the car.

Seriously, who knew the gift shop at the nature center was only open on Sundays from 1pm-4pm? Certainly not me, or I wouldn't have taken him there at his behest. I guess nature doesn't need the revenue from the gift shop, so why bother to have it open more than 3 hours a week? Trees don't need much, I suppose. Just a hug now-and-again.

There you go; all better.

My heart is as bitter as aspirin after receiving this gift, so I may be re-gifting this one. It is, after all, one of those unrefundable "experience" gifts that you can't return. The problem is that the poor soul that receives my re-gift won't know what hit them. Literally.

Next year, I think Conor should just stick with the tried-and-true purse idea. You can't go wrong with a purse, Conor. You can never have too many of those. The tantrum, on the other hand, I could do without.

Diva Is The Female Version Of The Hustla

I know what I'm wearing next Halloween.

"Conor," his 1:1 aid, Paisley, chuckled after he barked yet another order at her. "You are being such a diva."

Word to your mother, Paisley, was all I could think to say.

Paisley and I were trying our hardest to bring Conor's most recent holiday project to life. It's no secret that my boy loves Halloween. He could give two hoots about the candy, though.

No, what my kid likes are the accoutrements. C'est vrai.  It's the jack-o-lanterns, the stuffed scarecrows, the spooky skeleton and the fake gravestone that he enjoys.

Each year since I-don't-know-when, Conor has gone bazoinkers for jack-o-lanterns.  My poor husband used to wield an amazingly long kitchen knife and hack away at the poor squash like it was Pumpkinhead. (Take that and that and that and that!)

It was totally fun, though, since my hubs came up with some unique and refreshingly new curse words during the process, usually referencing excrement of some sort. Such a learning experience for me. (Why, I never!)

Rockin' it old school.  So 2009.

Then, one day, a light shone from above in Target (it is heavenly, after all) as my eyes alighted on the pumpkin carving kit.  Angels sang.  I quickly snatched it up.  Mon dieu! This was the answer to our travails!

Applying the pattern to the pumpkin, my husband wielded the tiny tools and wham-bam-thank-you-ma'am, we had ourselves a masterpiece.  Ok, well, maybe not a Rodin, but it was so much easier to create somewhat unique designs much more quickly than ever before.

Yeah, baby.  Scary ghost/vampire/devil-thing. Whatever.
Check out the stuffed scarecrow in the background.
His name was Steve.  Conor names them.
Yeah, I said "them". We have two. Two kids, two scarecrows.
Don't be a hater.

Little did we know, however, what we were unleashing. Once Conor saw the potential, he quickly became greedy. More jack-o-lanterns, increasingly elaborate designs, no-you're-not-DOING-it-right attitude. (Let's face it.  Conor can be demanding.  And he's not shy about it.)

Yeah, that's her.

It was like he was channeling Omarosa. (You remember her; the bitchy one from The Apprentice with pre-wackety-wack Donald Trump.)

And so there we sat, the three of us. Me, Paisley and Omarosa Conor.

Usually my husband gets pumpkin carving duty. But, since he had a meeting that night, the task of bringing Conor's vision to life on the pumpkin fell to us rookies. And it was not going well.  See, Conor didn't trust us to do as good a job as his dad. No confidence that we knew what we were doing.

Look, Conor?  We're doing it just like your dad! (I'm even spouting some of his semantic masterpieces.)

C'mon, little buddy, help us gals out here. We're doing the best we can.

"Want Paisley to fix the paper!"

"Want Paisley to use a different tool!"

"Want Mommy to help Paisley do it correctly!"  

(Uh oh, it's never good when Conor starts pointing his finger.)

"Want Paisley to do it like Daddy does!"

"No! No! Want Daddy, where's Daddy? Want Paisley to do it like Daddy!"

C'mon, Conor, stop barking out orders, little man.

Tell me somethin' where your boss at? Where my ladies up in there that like to talk back

Do We Need An Intervention?

My name is Conor, and I'm a butteroholic.

I love butter.  It's like Christmas and Halloween and and fireworks and my birthday all mashed together in a stick of glorious, creamy butteriness.

I'm not proud of my addiction. I just can't help myself, it seems.

It all started when my mom and dad (with my DAN! doctor's permission) let me start having milk products.  I was pretty allergic to milk when I was a baby; I would throw up everywhere and with much gusto. I guess I'm just one of the lucky ones to have grown out of the milk allergy.

That first hit just hooked me.  The creaminess, the melt-on-my-tongue wondrousness that is butter just floored me.  I couldn't help myself, I could not get enough of it.  The high, I lusted for it. I dreamed of it. Pretty soon, I insisted that it melt on top of practically every meal I ate.  On corn.  On baked potatoes. On rice. On mashed potatoes.

Oh hell, I'll even just eat it straight. Just shove that pat of butter right into my mouth, sit back, and savor the taste. I live minute-to-minute for my next pat of deliciousness. I can't help myself. It's an illness, you know?

After that first week, things got really bad.  I hit bottom pretty quick. I blame the butter.  I lied about how much butter I had eaten.  I stole. Mom caught me with my hand in the butter holder so often, she would just yell "don't eat the butter!" without even looking at what I was doing in the refrigerator.

After awhile, I even asked the nice lady at the movie theater to put that runny stuff they call "butter" on my popcorn.  (My mom wasn't happy, but she didn't want to create a scene.) I know it's not really butter, but it tastes like butter and that's enough for me.

The thought of butter consumes me. I create homages to butter holders in art therapy; at the paint-your-own-pottery shop; I buy them online.  (All with my own allowance, though. My mom's no enabler of this portion of my habit.) I even bought my mom a butter holder for her birthday.  Her birthday.

If Mom takes me to the grocery store, I'm stopping by the dairy case to grab a couple boxes of butter. I shudder to think we might run out. One day, I know I'm going to wind up at the corner store buying some out of my allowance. I just can't stop myself.

And if the power goes out?  It's every man and butter stick for himself.

My mom limits me to three pats of butter at lunch and dinner. If I ask for one more, she'll probably give that to me, but then she cuts me off. I'm not happy about it, but I've learned to live with it.  Occasionally we go to Outback Steakhouse, and that place is the butter bomb, baby, 'cause they practically give you a whole tub of the stuff. Although I catch my mom and dad telling the server (behind my back, dude) to only give me half portions. I don't know why they do that, I can handle eating a tub of butter, for heaven's sake. I just use a spoon and eat it straight. When you've been a butteroholic as long as I have, you can manage the bigger doses.

Really, I can totally stop anytime I want to.

My Favorites

Each night, I put Aidan, my typical 10 1/2 year old, to bed. He will occasionally allow his father to substitute on the rare mom's-night-out. But if I'm in the house, he's not going to sleep unless he and I do our little song-and-dance routine. 

After I turn out the light, I hug Aidan, thinking of a positive thing to whisper in his ear. It's part of our routine.  I sing a song, whisper sweet nothings in his ear, and then dance out of the room as he listens to his relaxation CD.

(I’m totally kidding about the sweet nothings. The dance routine, however? That's a mix of pirouettes, Irish clogging, jookin’, and I have recently added in some gangnam style. It’s a sight to behold.)

Last night, as we hugged each other tight, I told Aidan that he and Conor were my two favorite kids on the entire planet.
(Think about it.  I mean, all those kids just in India.  That's HUGE, dude, the entire planet. My kids must really rock.)

"Mom?" Aidan asked when I finished, still hugging me.  "How can Conor be one of your favorite kids on the planet, but he throws major temper tantrums?"

"Because he's my son, Aidan," I replied.  "And I love him no matter what. Just like I love you, no matter what."

I’ve often asked myself that same question.  Oh, not about myself, no. I’ll always love my kiddos, no matter what.  That’s true despite Conor's monumental tantrums, which cause me deep, immense heartbreak.

Over the years, it has never ceased to amaze me that the majority of Conor’s aids and therapists have loved and accepted him despite the severity of his behavior problem.

I always ask them when I hire them.  Why?  Why do you want to work with a child with autism?  Do you know he has a serious behavioral issue?  Do you understand what that entails? But, why do you want to?

Why?

I worry about it, you know? 

When my husband and I are gone, and Aidan has his own family to care for, how will Conor’s caregivers feel about supporting him? I guess I feel that someone who enjoys and likes my son will be more inclined to treat him respectfully, positively. 

All right, I’m just going to say it. I’m afraid Conor is more likely to be abused or neglected as an adult because he’s not all fun-and-games and cutesy-pie like some individuals with special needs.

I just worry.  That’s all. When I'm gone, who will love him like I do? (And don't give me some unique-mom-love pattycake crap, you know what I mean.)

I asked Paisley, one of his current in-home aids, about it one day. He had gotten a few fistfuls of her hair during one of his tantrums just a few days earlier, not to mention chomping one of her forearms.

“It helps that he’s just too damn cute,” she replied, laughing.

Captain Jack Will Get You High Tonight

Last night, Conor listened to Billy Joel's Captain Jack while holding onto my ear.

I snuggled down into him while he rested his iPad on his big Santa-like belly, and he reached over with one hand, grabbing hold of my right ear. He cradled the iPad with his left, and quietly honored my plea to listen to Billy Joel's Captain Jack. (He was skimming through the B's on the iPad song list.)

He held onto my ear throughout the entire song.

It's not so hard, really, to grab an ear when your mom's ears stick out as far as motorcycle handlebars.

A genius and an alcoholic, Billy Joel. Sadly, these things seem like they're not often far apart.

Damn Mosquito

Last night, my husband and I switched out the nightstands from our master bedroom and the guest bedroom. Ours were quickly becoming more shabby than chic, and we don't have many guests since Conor regressed anyway.

While I was cleaning my old one out, lo and behold, I found two books that I hadn't seen in years. For some odd reason, I hadn't put them with my tower of autism-related books in my office.

(Ok, ok, clearly, I'm no Sherlock Holmes. I mean, seriously, it's the nightstand. Whatever, I'm disorganized, leave me alone.)

The first, Born On A Blue Day by Daniel Tammet, is a fascinating autobiography by a young man with Aspergers who can learn a new language in a week, recites Pi to more than 22,000 digits, and has synethesia. (He sees numbers as shapes, colors and textures. Fascinating.) He also struggled for years with his autism and finding his way in the world.

The second, Setting Limits With Your Strong-Willed Child: Eliminating Conflict By Establishing Clear, Firm and Respectful Boundaries by Robert J. MacKenzie is... well, it's pretty self-explanatory, don't you think? It's not autism-specific, but I guess I was grasping at straws.
After my initial little crow of delight (caw caw!), I glanced again at the books and thought--that's it. That's it in a nutshell. These two books say it all.

These books are emblematic of both my search to understand my son and what goes on in that miswired brain of his, while, at the same time, trying to shape his behavior so that he's able to be fully integrated into our community.

You know, the basics--

why the hell is he doing that and how can I get him to stop freaking out?

Self-portrait

After my Trick Question post, I received a comment from a reader, who actually thought Conor's request to download a video on my brother-in-law's computer was communicating a desire to belong. She came to this conclusion after watching the Cyndi Lauper video, and felt, quite strongly, that we should let Conor watch and listen to the video. (You can view the comment by clicking on the orange link over there. Yeah, Mom, that one, at the beginning of the paragraph.)

After more than a decade of coping with my son's autism, I can honestly say that Conor's request has very little to do with that specific video.  Conor downloads and watches many videos on his computer, from Ruby Summer's I Can Do What I Want to the Dixie Chicks' Not Ready To Make Nice, from Michael Jackson's Bad to Rihanna's Shut Up And Drive.

(Wait a minute...  Is he telling me he can do what he wants and I should just shut up and drive the car or something bad will happen?)

OMG!  WTF?! 404! NW! SEWAG! CAS!

We've offered to let him download the video on his own computer here at home, and he has declined. It's no longer about control, since he lost that fight a year and a half ago when he was placed on the NBU. He knows he's not allowed to download songs except on his own computer.

(Why, you ask?  Why can't he download a video on someone else's computer? That's for a different post. Let's just say that if you are a tax accountant and you find a client's monumental tax return that took you hours to complete in the computer's electronic trash can? Ooooh, baby. Conor does more than just download videos, and it's impossible to watch him every second of every day.)

Look, I know he was distressed when he wrote this note.  About what, only he knows. And he can't say. That much we know.

However, he IS trying to find a way to soothe that distress by indulging in an obsessive activity, i.e. downloading a video on his uncle's computer. (Perseveration in autismland.) The particular video itself is inconsequential, although he does get stuck on (perseverate, say it with me) specific videos at times.

Experience, though, is a very effective teacher, and we have learned (the hard way, admittedly, I am not a star student) that giving in to these obsessive requests does not soothe his distress. It may help for a minute or, quite frankly, it might not help at all. Because you still don't know the root of the distress.

Whatever is bothering him, giving in to this obsessive activity will not help and it could actually make the problem much worse by scratching that itch.  

See, it's like this. You've been bitten by a mosquito before, right?  If you do your best not to scratch it, it may very well go away quickly.  Put some hot water on it, rub a salve on it, slap a band-aid over it, have your grandma give it the evil eye and--poof!--it goes away. 

Not without some itching (and, if you're me, bitching), but it goes away.

But scratch furiously at the mosquito bite?  It only itches more.  So you scratch it more.  So it itches more.  And then you put some Caladryl Clear on it and it works for a little while but then it itches itches itches so you scratch scratch scratch it.  Until it bleeds. And then it hurts, so you rub it and it still itches a little more, so you scratch the scab off and it bleeds some more.  So you pick it some more.  And then your mom gets pissed because you've gotten blood all over the carpet and... 

Well, I digress.

So what does a person do? 

Currently, we're trying a cocktail of speech therapy to improve his expressive communication and identification of emotional states; a calming salve of behavioral relaxation techniques, headphone-listening (Beastie Boys a current favorite, I kid you not) and other age-appropriate calming strategies; structured behavioral protocols; and modifying the environment (within reason). 

This is, of course, a different type of cocktail than I use as medication to soothe my anxiety.  But to each her own.

I can't remember a damn thing from Setting Limits With Your Strong-Willed Child after all these years. But I can tell you that Conor is never, ever, ever getting back together with Uncle Jeff's computer.  

Ever.

Ok, the actor even looks like Jake Gyllenhaal.  And is Taylor Swift a plushie?