The last 2012 column from The Autism and Asperger’s Digest is out. Click here to read more:

Jamie Pacton nov 2012 column

BIP-pity-boppity- Boo!

Want to know what the BIP stands for in our house?

Behaviour Intervention Plan.

As in, Liam’s doing something crazy and it’s time for an intervention. As always, the ladies who put the BIP in all of our Bippity-boppity-boos are Liam’s patient, incredible ABA therapists.

This team, of women (really, the most organized, put-together pack of bad-ass brainiacs I’ve ever seen) have spent the last year teaching him, training him, playing with him, laughing with him, putting up with me, and helping him learn and grow so much. They’ve figured out how to keep him at the working table (a cute blue one from Ikea) long enough to do several sets of exercises (he started only being able to sit for 2 seconds at the table a year ago, to calmly going to the table and sitting for at least 10 minutes 4 times in a 2 hour session).  They’ve taught him signs, potty-trained him, they go with him to preschool 5 mornings a week, and they are constantly taking data, modifying programming, and celebrating his progress.

I have learned a lot from them– about how to relate to and work with my own child, about how to see the positive among all the other things our long days bring. I’ve also learned to see some of L’s more aberrant behaviors– biting, screaming, scratching, hair pulling– not as things that make him a bad kid, but rather as problem behaviors that have a root cause that we can modify and address.

It’s awesome. F*n magical, in fact. I know many parents worry that ABA will make their children into robots or that aversives (negatively associated training plans) will get out of control, but that’s not the case. You can read more here about our therapists’ philosophy on helping ASD kids:

http://www.centerautismtreatment.org/home/ANoteFromtheDirector/tabid/58/Default.aspx

but, in a nutshell, Liam’s fairy godmothers want him to like them. They want him to play, follow directions, and be his best little self. They have helped him reduce his reckless, shrill screaming from 60 times an hour to a mere 4 in a 4 hour school day (much to his teacher, classmates and the school’s relief).

At first it was really hard for me to admit that I was not enough for Liam. I was not really a “it takes a village” kind of mommy.  I thought that if I stayed home with him, and read to him, played with him, and had a generally great time, it would be enough. But, that was not true with Liam. He needed lots more help and people, and we’re so luck to have no just a village, but a magical team of experts to guide him and steer us too.  (Also, I must add, that since I have beautiful, put-together women in my home all the time, it’s inspired me to get out of the postpartum sweat pants rut I had fallen into and declare that makeup is a daily non-negotiable, not matter how little sleep I go the night before– ha!). :  )

So, thank you magical ABA therapists.

You do great work and, I know I’ve told you this before, but I’ll say it again: “we couldn’t do this without you!”

(And thanks to JD for reminding me that it has indeed been a long time since I last posted…and for all her hard work with Liam today and every week!) : )

What a month! Here are 2 essays that have come out just in time for the end of Autism Awareness Month.  Thanks for reading!

: )

-Jamie

We’re Pretty Happily Ever Asperger’s (yep, that’s the name of the book I’m working on)around here.  Check out this short essay about being married to a guy with Aspergers:

http://autismdigest.com/diagnosis-for-dad/

And, also, “My Autistic Child has Not Ruined My Life” on The Age of Autism:  

http://www.ageofautism.com/2012/04/my-autistic-son-has-not-ruined-my-life.html

Check out my first guest blog at Hopeful Parents:

(Copy and paste for now until my brilliant webmaster makes this link magic happen…)

http://www.hopefulparents.org/2012/04/acceptance-awareness-empowerment.html

Then, stay to read some more of the stories there!

I teach writing—academic, creative, and technical—for a living. Each week, I help students improve their prose,manage their time, and become better at the craft of writing.  While I’m constantly surrounded by writing, I don’t have much time for my own work.

The fact is—with a special-needs preschooler, a toddler, hundreds of essays to grade each week, low-level childcare, and a husband in graduate school— my own writing is something that just barely fits into my schedule.

Unlike many professional writers I can’t wake up, stroll to my writing nook, daydream, and devote five uninterrupted hours to my daily quotient of words.

Quite the opposite.

In the morning, I’m lucky if I can cook some eggs, let the dog out, brush my teeth, make coffee, change diapers, and still have a complete thought.

Life is busy.

It will never slow down so I can write. But, this does not mean I am giving up on the idea of writing.  What I’ve discovered is that if I want to produce anything, I need to give up on the idea of the perfect spot or perfect time for writing.

So, how do I fit writing into my schedule?

I think about ideas while I drive; I take them into the shower; and, I notice things in the world and bring them into my work.

For example, currently, I’m working on a middle-grade fantasy novel.  I know the plot, I have the characters, I have a draft done, but, until recently, it felt lifeless.

Then, all of a sudden, while searching for my son’s shoes, I saw one of my character’s shoes in my mind. They were black and brown skateboarding shoes with scuffs on the toes and Sharpie drawings on the rubber.  Seeing them got me thinking about other items my characters might have.  In almost no time, my characters evolved from mere lists of traits into living, three-dimensional people.

Keeping stories alive is important and so is taking notes.  I try to jot a few of my thoughts, observations, and sentences from the day onto napkins, a post-its, or on my laptop. Sure, I rarely get more than a page done, but writing is like working out or losing weight or helping a child develop- it’s a marathon, not a sprint.

Being ready to seize on moments to write is crucial to fitting writing into a busy schedule.

A few days ago, both my kids fell asleep on the way to the grocery store. I could have woken them up, plopped them into the cart, and dragged them my grocery list.  Or, I could have called a friend or read the book I had brought.  I realized, however, that this might be my only quiet time in the day.  So, I parked, pulled out a notebook, found a pen, and wrote for half an hour while they slept.   It wasn’t my ideal spot, it wasn’t optimal conditions, but it was bit of quiet when no one needed me.

So, although I’m busy, I know I can finish this novel.

Doing it will take persistence, planning, work, and a willingness to fit writing in where I can. I’ll have to keep my eyes open and a pen in my pocket.  I’ll have to resist the urge to watch TV after a long day.  I’ll have to work, suffer, imagine—and do all this while doing everything else in my life.

Will I ever make as much money as Stephen King or JK Rowling?

Not likely.

Is it worth it?

I think so.

Because I know that if I can write a novel in the grocery store parking lot, it will change me.  It will teach me the joy, pain, fear, and triumph of creation.  It will let me hear my own voice among all the other noise in my life.  And, most importantly perhaps, when this book is done, I will know what it is that I can do even when it seems like I can’t possibly do anything more.

I’ve noticed a general melancholy pervades my blog, which is fine, because that’s my life sometimes– and especially my p.o.v. when I’m reflecting about autism, but I’d like to step away for a moment and address another important part of being a grown-up, being a feminist, and being an autism mom: my hair.

Ha! Interested yet? You should be.

I don’t wear my emotions on my sleeve, I wear them in my hair.

In general, I ebb and flow between good hair and wild-woman hair.  I read recently that supermodel Giselle Bundchen doesn’t even brush her hair (side note: which is much less disturbing then when I read that Jessica Simpson rarely brushes her teeth…ewww),and I found in that an ounce of solace.  I have this sort of thick, wavy hair that frizzes in rain and can flip out when it’s feeling sassy. I use my flat-iron so little that I don’t even know where it is and my hair dryer is so old that it now blows out only cold air.

My thing in college and pre-kids was to drink with friends and then chop off my hair and offer to cut other people’s.  (which resulted in one of my college friends have to wear a hat all semester log to cover the unevenness that too many screwdrivers and pair of scissors wrought).

But Jamie, you protest, your hair looks bombin’ on your webpage!

Of course it does, I reply mischievously, because I only ever take professional photos the minute after I get home from the salon.

So, now you know my secret– I usually have not-so-good, pretty-bad hair (and all my son’s therapists have gorgeous sleek hair that makes me go, sheesh, who has time for hot rollers at 6 am? Not this autism mommy)

Does this good hair matter? I’d like to think no, since I identify as a modern woman in charge of her desires, but the truth is, when I look put together, I feel more put together.

Much more to say here, but let’s just consider one more fact of my hair: my best friend bought me gift cards to my local salon 3 months in advance because she just knew I’d get into a mood and cut off all my hair (has happened 3 times in the last 3 years) or decide to home bleach it again (twice this year).

So, yes, maybe I have a problem.

But, hey, if bad hair is all that people are staring at me for as I grocery shop with my autistic preschooler and my loud-loud-loud toddler, that’s fine with me.

Tell me more to readers: at the end of the day or the beginning- is good hair worth worrying about?

Also, here’s the before/after shots of my most recent adventure with home bleach kits…

I saw my son’s non-autistic twin on a Friday, just before New Year’s Eve. Funny, I’d just been reading the January National Geographic article about twins, and how they can teach us so much about expressions of the human genome. About ourselves. About who we could be. About who we are. And therein lies the lesson of the New Year’s Doppelganger.

We were at a laid-back family-friendly resort in southern Wisconsin with my in-laws and the boys.  This place is built in a wide circle with great views of a small lake on three sides. There are hallways that connect one dark wood lounge to the next. All are covered in creepy, Shining-esque carpets and silence.  My husband ran down these hallways as a child, slunk through them as a teenager, and we strolled through them when we first fell in love. Now, my children spend days racing through them, licking the walls (in Liam’s case), and enjoying the fireplace, game room, and pool at this place.

So, on this Friday night, after a particularly exhausting day of swimming, Liam was passed out in our room with Adam, but Eliot, my sister-in-law and I were strolling the halls. Eliot was wide awake and toddling by the huge fireplace and lounge near the pool.

That’s when I saw him.

A short, blonde, preschooler, wearing a neon-blue-and-green lizard-covered bathing suit. He looked so much like Liam that I had stop and make sure my son hadn’t gotten up, dressed himself for the pool, and raced out of the room (something he was more than capable of, since he knows how to open the door and had escaped several times already).

“Oh,” I said stupidly to this boy’s bunch of adults. “My son has that same bathing suit.”

(And looks just like your son. And has that same blonde hair and cute smile and toddler tummy. But your boy is talking and mine isn’t. Your boy knows that you’re watching him, and mine doesn’t. Your boy looks exactly like the boy I thought I would bring to this place four years ago when my husband and I decided to try to get pregnant).

The boy’s mother smiled at me. “Liam! Liam,” she said to her son. “Get over here!”

I gripped my sister-in-laws arm and held Eliot closer.

No. This boy’s name wasn’t Liam too. Was it? How could it be?

Hot tears in my eyes. Dammit. I was going to cry.

“Oh,” I repeated, grimacing more than grinning. “That’s my son’s name too.”

Fake laugh and then walk down the hall as fast as possible.

My sister-in-law was crying too.

“Why?” I asked, furious and sad all at once. “Why just like him, but not? It’s like Liam exactly, minus the autism. Same hair, same bathing suit, same goddamn name.”

“You’ve been given this boy for a reason,” my sister-in-law assured me.

I didn’t know about that.

“Let’s go have a drink,” she said. “I’ve got New Year’s champagne in my room.”

I did know about that.

“Good idea,” I choked out. “Just let me go say hi to Adam.”

“Eliot can come play in my room with my I-phone,” she offered.

Sweet Eliot was laughing happily and I handed him off to her and let myself into my room. Adam and I had been fussing at each other about something-who-knows-what before I’d left, but I fell into his arms, sobbing. Liam slept through it all and Adam was sad with me, steady for me, and we endured it as best we could.

“His same name! His same bathing suit! His same look, but talking!” I blubbered, unable to say more. “Why, why, why?”

Adam just held me, and that’s all we can do sometimes.

I don’t know why this child crossed my path beyond sheer, inexorable, cruel coincidence, but I do know that Liam slept through the night that night and woke up refreshed. He was happy all aday and we had a great time playing in the pool the next day (yes, I did dress him in the same bathing suit that his doppelganger had on, just to show the universe that I knew what was up). Liam loves water and he giggled delightedly, independently bobbed around the pool, and jumped off the side like a pro.

And so, here’s the lesson I suppose: I spend a lot of time thinking about the boy I thought I had, or should have had, or wanted to have, but the simple truth of it all is that I fiercely love the boy I do have. I want him to talk so much, but I don’t want to trade him in. Not for all the gabby, precocious doppelganger Liam’s in the world.

But, still, universe, a bit more subtlety next time, please?

I’m begging you.