Wednesday, April 24, 2013

An Artist At Work

Conor's self portrait in clay and mixed media
One weekend not too long ago, Mary Beth Marsden, a local journalist, interviewed me about Conor and his art for a video she was putting together for Real Look Autism. A nonprofit organization, Real Look Autism uses videos to share ideas for working with children who have Autism Spectrum Disorders. Her website and YouTube channel also serve as places to share insights.

Mary Beth and I chatted about Conor's interests, his art, our mutual friends, the autism community. (She has a child on the spectrum as well.) As we talked quietly in the next room, her cameraman, John, filmed one of Conor's art therapy sessions.

"Is Conor always this quiet?" she whispered as we watched Conor and his therapist from the next room.

"No," I replied. "It depends on the day."

Some days my ears ring from all his chattering and sing songs, requests and scripts. Other days, the silence deafens me and I strain to hear a murmured 'yes' or 'please'. I'm never quite sure why this is so. Why some days he seems to grasp language so easily, and other days it eludes him as he searches mightily for it. Sometimes you can actually see the struggle on his face. Other times, it's as if he can't be bothered; there are more interesting things going on inside his head.

Is he tired? Anxious? Noncompliant? Out of sorts? Overwhelmed?  Preoccupied? Do the words move around in there, so much so that he can't find them some days?

Yes. No. Maybe. I think so? Probably. Who knows.

It's a mystery to me, as much of my son is. I've always admired those parents, mostly moms, that proclaim that they know their child best. Know them so intimately, in fact, that they can tell you, without a shred of doubt, what their child is thinking and feeling, what the best approach involves.

Too often, for my comfort at least, I feel my son is hidden behind a shroud, obscured from my ever knowing him thoroughly and intimately. I'd like to lift that veil completely one day. For now, we're stuck with peeking under it once in awhile. It vexes me, to be honest. I want to know what's in there, what is in that brain? There has got to be more in there than he can ever express verbally.

Conor's airport. He says this is the Southwest terminal.
He has plans for an American Airlines terminal now too.
Perhaps that's what made me try art therapy with Conor so many years ago. I had read about it in one of the very first Pathfinders for Autism newsletters, and art therapy sounded like a fun-but-therapeutic way to fill 45 minutes. Or maybe I was in my 'throw something at the autism and see if it sticks' phase. (We tried horseback riding and massage as well. He liked massage; I liked the horses. We stuck with massage. I miss the barn and the sounds of the horses huffing at me.)

Oh yes, of course, we tried Applied Behavioral Analysis, Relationship Development Intervention, biomedical treatments and other things as well. All had their place.

But art therapy? Seeing Conor become an artist while improving his functional, life, and social skills has been a uniquely joyful experience for me.

I've included two videos. First, is the marvelous piece from Real Look Autism featuring his art therapist, Cathy Goucher. Cathy co-founded Make Studio, and she has been working with Conor since he was eight years old. They did a really wonderful job. You'll notice, however, that Conor doesn't talk much in the video. For some reason, that day, he didn't have much to say. In the end, I think he was tired, and he didn't like the fact that art therapy was on Saturday instead of Tuesday. I guess.

In the video below, I asked Conor to talk about the hotel he is building with Cathy. (Pardon the sound of running water, I neglected to turn off the filters for the fish tanks. Sigh.)

Sometimes he says he needs help thinking of the answer. And at one point, Conor starts to list numbers he somehow associates with using the treadmill.  I have no idea what it all means (something about how long you walk on the treadmill), but I think it provides some insight into how... odd his thinking and verbalizing seems sometimes. Hey, at least he corrects me when I'm wrong about the levels in his hotel. And why am I so loud?

Saturday, April 13, 2013

Because I Said So

Yeah, I did it. I swore I never would, at least to Conor, but I did. It was inevitable, I suppose. I've spent years trying to structure things, and communicate things, and explain things in terms he can understand.

Years of speech therapy focusing on expressive and receptive language, social skills groups that never quite worked, reams of paper spent on social story after social story, doctors and diets geared toward better health, better behavior, increased language and learning, hours upon hours upon dollars of Applied Behavioral Analysis to break down every little task and academic goal.

All trying to integrate him more smoothly into our family, our community, into... our life. To help him understand the world and to help the world understand him.

At the end of the day, I just cracked.

"Mom?" Conor asked, squeezing his hands together in front of his ample belly. "Can Conor play the drums now?"

"No," I replied, sighing with exhaustion. "You can't play the drums now."

Conor had already eaten, that's true, but my husband and I were trying to get our dinner on the table and do homework with Aidan while simultaneously tripping over the dog with every step. (Poor Linus had been in the kennel while we were away, and he had what Aidan lovingly calls "kennel fever". Translation: the dog has lost his damn mind.)

It had been a long day, for reasons that are now unclear to me. But I was exhausted and wanted a modicum of quiet.

"Why?" Conor asked, continuing to wring his hands together. "Why can't Conor play the drums?"

"Because I said so, Conor. That's why."

Oh boy. There it is. Yeah, I said it.

We'd spent years trying to elicit the 'w' questions out of Conor. You know them from journalism class--who, what, where, when, why and how. (I don't know how 'how' got in there, but there it is at the end. It must be at the end, because Conor doesn't ask 'how' questions yet.) Finally, after gobs of intensive intervention ('gobs' being the clinical term for years and years), Conor began asking as many 'why' questions as a typical toddler.
For a kid who lost all his language for a good long while, asking 'why' is a huge deal.

I loved it, I reveled in it. I swore I'd always give him an explanation to the 'why'. Until I started running out of answers.

Merry Christmas?
I should clarify that Conor's usually not asking 'why' questions about abstract concepts. You know the typical--why is the sky blue, Mummy? Why are the leaves green, Mummy? Why are there so many Kardashians, Mum?

Generally, Conor's asking 'why' in response to a decision we've made that affects him or when someone is showing a strong emotion. ("Why is that baby crying?" for example. Or, why the hell can't I play on the drums, lady?)

And so here I was, just too weary to explain to him that my ears were just too tired to hear him bang bang bang on his brother's drum set. How do I explain that to my son who never seems to tire of his own voice, loud music, slapping rubber balls against brick walls, the thwack thwack thwack of the basketball on the court?

But then again, I really can't believe I even said it to him. Because I said so. I mean, what's next?

Improved eye contact and joint attention? Don't you look at me like that! 

Modeling behavior from typical peers? If Johnny jumped off the bridge, would you jump off too?

Do it, man. It's totally RAD!

Having to explain an abstract concept more than just a few times so he understands it? How many times do I have to tell you?

Refuse to deal with noncompliant behavior? Wait until your father gets home! 

All because I was just too exhausted to explain to Conor why he couldn't crash away at the cymbals on his brother's drum set.

I suppose it's not that big of a deal. After all, most parents find themselves spitting out these words to their spawn eventually. Perhaps it's even inevitable, despite best intentions.

Come to think of it, I've got a few other parenting gems that I haven't pulled out yet when dealing with either of my boys.  

Phrases like--

You and me? We're going to have a come to Jesus if you don't straighten out.

Yeah, I'll give you somethin' to cry about.

Don't smile, your face will crack.

If you think you're going out in those clothes, you got a 'nother thing comin'.

And my favorite--

Sit your ass down in that chair, I'm not done talkin' yet.

Monday, April 01, 2013

Talk To The Hand

Talk to the hand
I don't want to be on CNN. I know they're gonna call and I'm gonna be all, like, no comment. I don't want to talk about it, just read my blog. I'm not a publicity hound, these things happen, and I just want to move on with the dysfunctional little life I've got going on here.

Ok, maybe Anderson Cooper 360 (he's so adorable) or even Morning Joe, although Joe Scarborough kind of tweaks me the wrong way. (He has a kid with Aspergers so I'll make allowances.) But I am avoiding that Nancy Grace like the plague.  Nothing good will come of that. At the end of everything, I may have to go see Dr. Drew but I certainly don't want to end up on The Situation Room.

We don't want a "situation".

See, on Thursday, Jim, Conor and I board a plane for Florida. Spring Break, you know. My anxiety about the flight has been off-the-charts awful.  I don't know why, we've flown with him before. All I can picture in my mind's eye is Conor having a tantrum on the flight. (I've had LASIK surgery so my mind's eye is very clear, especially when picturing bad behavior from Conor.) Can you imagine? I can, because I've been thinking about nothing else for the past few weeks.

And I can totally see the plane having to turnaround and make an emergency landing in Ohio or something, and then everyone would be mad at us 'cause Ohio is definitely NOT Florida, and we'd be on the news (maybe just Headline News?) and I'll look awful 'cause you KNOW I'll be crying my eyes out and I don't wear much make up when I travel.

All I can say is that Conor's lucky I bought nonrefundable airline tickets 'cause I would have sooooo cancelled this trip ten times last week.

It's gotten so bad that when I asked Conor's psychiatrist for some medication to knock him out if he becomes super-agitated on the plane (super-agitated is the clinical term), my husband asked her if there was something she could prescribe me as well.

"Thank you, honey," I replied smartly, "but I've already got my Xanax prescription filled."  (I don't ever actually take it, but I have it. You know, just in case.)

She prescribed Ativan. In addition, she outlined how to manipulate one of his daily medications for optimal sedative effect. Score!

Making sure Conor is ready for the extreme change in his routine when traveling is twice as hard as preparing him for the simple absence of a parent and sibling for a day or two. (Or four, whatever.) I've written two social stories (one is 12 pages long, I think, and the other is 14 pages long).

I've had to dissect each and every step of our journey. Dissecting can be quite messy and complicated, especially when it's a fetal pig. But I digress. For some reason, the resort time isn't bothering me quite as much, but I'm obsessed with the plane ride.

I can't argue with him. They're delicious.
Look, if you don't have a kid on the spectrum, you might not appreciate the fact that since we're flying American Airlines rather than our tried-and-true Southwest Airlines, Conor might not have his usual Auntie Anne's pretzel before he gets on the plane. Southwest flies out of a different terminal than American, and the American terminal does not have an Auntie Anne's.

I don't know, maybe they pissed Annie off or something. But if we're running for the plane (like last year, oh my gawd, whatta story), nobody's got time for that.

No pretzel could mean challenging behavior from Conor, so I have to make sure he knows about it ahead of time. On Southwest, we pre-board (mykidhasautismsocanwehavethebluepassplease?) and Conor can pick out his own seat. On American Airlines, the computer assigns the seat.  You know how it goes, I'm sure. I had a boss once who had a cow about where he sat almost every single flight I booked him on.

(If a grown man can't handle it, I suppose it's a stretch to think my adolescent with autism will make it easy. If I had known about social stories back then, I would've written my boss one in a minute. He had a whole book with every type of plane and their seating layouts that he would reference before each trip. He would have his own little tantrum if the travel department couldn't get him a preferred seat. I kid you not.)

But it's not as though I'm ignoring the time we're on the ground in Florida. I've reserved all the resort activities that could be reserved. I have to say, the phrase "first-come, first-serve" strikes fear in my heart. It's impossible to keep Conor occupied for hours while we camp out at 4am for the tennis court. He likes to "play" tennis, despite his loathing of actually running for the ball.

"Want Mommy to get the ball?!" 

Who do I look like, Serena Williams? Get your own ball, kid.

Conor doesn't like to wait, or to share to be honest. And those damn tennis players like to get up super early! And, they get pissed off when if I Conor hits a ball into their court by mistake. Go figure.

In any case, I'm done boring you with all my planning and obsessing. I could go on forever about all the minutiae we have to consider. Right now, I've moved on to figuring out when to give him the Ativan "test run". (I've got two days to try it and the doctor only just called it in this morning.) Yeah, you don't want to be giving Conor a new medication at 38,000 feet without having tried it first at home.

That could be a whole different situation. And that situation's not necessarily any better than the other situation. So we're just hopin' not to have any situation. Of any kind. At all.

Even this one--

Hey Mom & Dad, this is Mike "The Situation"
Sorrentino from MTV's Jersey Shore. (I figure
everyone else knows who he is.)