Autism: Beaches

Three years ago this month, Andy and I snuck away for a few days in Aruba. We hadn’t been away together a-l-o-n-e since Amy was tiny, so when we had the opportunity to spend a long weekend in Aruba, we jumped.

We purchased the trip from a friend whose brother had purchased it at a charity auction. Unfortunately, he couldn’t use the trip because his wife had died suddenly and he was left alone to parent their son, who had autism. (Funny how that word, even then, managed to creep into our psyche.)

I cried when my friend told me about her brother, so far away. Life seemed so cruel and unfair. It made me want to stop and reconnect with my Andy.

Wouldn’t it be nice if tomorrows had some sort of guarantee?

But one thing I know for sure is that life really is just an extended series of hellos and goodbyes.

So we flew off.

Little did we know, in just a couple of months, the word autism would become one that was very personal in nature.

I look at these pictures now and smile. I laugh about what different people we were then.

But then it occurs to me that that’s not really true.

We weren’t different people.

We just didn’t know ourselves quite as well then as we do now.

We loved each other then.

Still do.

Autism has a way of making you dig deep. Look at the world with a different sort of shades…

And yes, the last three years have been filled with dark times.

But they’ve also been filled with warm, sun-on-your-shoulders, sand-in-between-your-toes feeling moments.

Superdad Andy and I are sneaking off again this weekend. It’s been too long since we’ve had some time alone. Next week I start a new job, Amy starts third grade, and Jack starts some new in-home therapy.

Life is about to gloriously implode.

But for now, I’ll take the sand and one of those drinks with the umbrella in it.

And time with the truest of traveling companions….in so, so many ways…

Autism: Is It Just Me?

Amy has a friend over today. It's her second playdate this week.

And I worry.

I checked in on Amy and friend this morning, just to make sure they were safe and happy.

And Amy was busy making a list.

Playdate Friend watched. Concerned Mom (me) asked, “Amy, what are you writing?”

“A list of Playdate Friend’s Webkinz, Mom…”

She huffed and scribbled on.

And I felt the overwhelming ickiness of worry.

I know. I know it’s silly.

But history has proven that I’m prone to counterproductive episodes of denial.

And Amy makes lists.

Lots and lots of lists.

She made lists of classmates with her other Playdate Friend earlier this week.

I throw away scraps and scraps of paper on a daily basis filled with Amy’s lists.

Did I mention that she also memorizes lists?

Just a couple of weeks ago when we were addressing the invitations to her birthday party, she wrote the address of every friend she invited … without looking up a single one.

She knew all of them by heart.

Is that normal?

Is my worry normal?

What the hell is normal anyway?

Her teachers all love her. Her grades are absolutely perfect. She’s an academic superstar.

But she’s quirky, that one.

And her quirky mom has no clue what normal is supposed to look like.

Adding fuel to the fire, I read a blog post recently written by a mom of a little boy affected by autism. Her older NT son was fine … or so she thought until he tried to commit suicide at the ripe old age of 9. It was then that he was diagnosed with Aspergers. Thank God he’s alive and is getting the support he needs now.

For now, I watch and wait.

And I wonder…Are my eyes wide open?

Or am I the one guilty of perseverating?

Deep in my heart, I know she'll be just fine. I'll communicate concerns to teachers, counselors and physicians. The village will take her.

Now excuse me as I take this next call ...

Miss Amy has yet another friend calling for a playdate.

Autism: Transitions

Nothing endures but change
~Heraclitus

I first read the words written above in Coach Tim George’s history class circa 1980. Even though he was a coach, he had the reputation of being one of the toughest teachers in school. My freshman heart thumped as I watched him stroll into class on an oppressively hot August day. What would this horrible man do to my GPA? The window units hummed furiously, attempting to ward off the Texas heat. Without a word, he walked directly to the chalk board and scrawled this quote across the dusty green surface:

Nothing endures but change

It was a moment I will never forget.

Because I somehow I knew it was the truth.

Now mind you, I’m not one of those who remember every detail of my educational experience. My beloved husband Andy can still quote Macbeth and Hamlet and Wordsworth. The laws of physics and trigonometry are still easily accessed by his weirdly brilliant computer of a brain.

It possesses total recall….

Mine, not so much. Somewhere along the way, I grew distracted. I lived in the moment of morning sickness and tax returns and coffee and rush hour traffic and dirty diapers…

And autism.

Over the years, I’ve experienced the inevitable brain dump.

“Go ask your dad…” I mumble, over and over.

How did this happen?

Nothing endures but change.

This. This sunk in.

I didn’t lose it. Because, by God, I used it.

And now it’s late August. September is right around the corner. And I find myself thinking about change, wondering where it will take us next.

The months of August and September for some reason are the months of change for our family. Amy was born in August, Jack in September. We moved from Atlanta to Baltimore in September. From Baltimore to Chicago in September. From Chicago to Dallas in August… And finally, from Dallas to Boston in August.

We’ve been here a year now. And I find myself looking around. Assessing our situation. Peering down the road, hoping for a just a glimpse around the corner.

But of course I can’t see a thing.

So I drink in the beauty of my sleeping babies, tangled up in the covers of Jack’s big boy bed.

Amy starts third grade soon. She’ll be standing at the end of our driveway, waiting for the bus in a matter of days. She’s already chattering about the MCAS and obsessing over her class list, e-mailing back and forth with her teacher. Her pencils are sharpened. She's ready to go.

Jack has a fresh battery of appointments and evaluations to get through. Expert neuropsychs and educators will attempt to identify the change in him. Assess the progress.

Fine tune.

As for me, I lace up my running shoes and crank up my iPod. I kiss my sleeping husband as I rise with the sun. I look in the mirror and see a woman in her forties looking back.

How and just when did this happen?

I sip my coffee.

And thank God for the constants.

To Coach George and Heraclitus I would say this: You almost got it right.

Nothing endures but change …

With one beautiful exception:

Love.

Thank God for the Love...

Autism: Shameless

Is it a bad that Jack is running around in his sister's old Hello Kitty underwear while my in-laws are here visiting from out of state?

The potty training is going well, but it's been a two-accident day and I'm fresh out of clean boxers with the gender-appropriate dinosaur print.

He's wearing an Indiana Jones t-shirt ...

I figure that makes it a wash, right?

Autism: "Simple Jack's" Response to Tropic Thunder

You can't put the toothpaste back in the tube ...
~Amy Ursitti

I mulled the proper response to the whole "Tropic Thunder" controversy over and over in my Autism Mommy head this morning as I drove Jack to school.

I didn't want my response to be the predictable raging mother thing. There will be plenty of that to go around. On the flip side, the whole sob story/ violins swelling in the background approach didn't feel right either.

And then it dawned on me that the video camera was in my purse. So, as my little "retard" waited in the car line with all of the other little "retards" who have to go to school year-round while their typical peers go to camp and sleep in, I filmed him. I thought maybe the folks at Dreamworks and my comic buddies Stiller, Black and Downey might want to take just a moment to hear directly from one of their lucrative punch lines...



Here's the thing: I'm a fan of these guys. They're funny. They actually have raised funds and awareness in the past for organizations that help people with disabilities.

Good P.R. I guess...

Because, quite obviously, they just don't get it.

Using the word "retard" seventeen times in a movie whose target market is fourteen year-old boys, is tantamount to tossing the car keys to a drunk.

Hey guys. Why don't you just go ahead and publish Bulllying for Dummies while you're at it?

I know you're adorable and funny and all that... But an apologetic grin and shrug of the shoulders on Access Hollywood just doesn't cut it.

And seriously, do you think when you're in your golden years, you'll look back with pride about making a money via a film that mocks those with intellectual disabilities?

Do your moms think this is cool? Really?

So maybe you could take the advice of the late, last lecturer Dr. Randy Pausch, who defined the proper apology as having three crucial components. Dr. Pausch said it should go something like this:

1. What I did was wrong.
2. I feel badly that I hurt you.
3. How can I make this better?.

I'll help you out with number 3. Write a big check to Special Olympics. Go on the network news and apologize. Start a campaign that promotes the inclusion of individuals with disabilities. Oh and while you're at it, donate all the potential DVD sale proceeds to Special Olympics too.

I know you didn't mean it in a bad way...

But you can't put the toothpaste back in the tube. And you shouldn't exploit and demean those who can't really stand up for themselves. That's a great, big Autism Mommy no-no.

Now run along ... and never, ever let it happen again.

***

For more information, please read Special Olympic Chairman Tim Shriver's commentary on why "Tropic Thunder" shouldn't be seen.

Most importantly, please join me in visiting the "Stop Using the R-Word" web site and pledge to respect and value people with intellectual disabilities.

Autism and PottyTraining: The Long Awaited Update

It's hard to believe that this





was seven months ago.

Talk about progress! Jack is wearing big boy underwear all day, every day. Now if we can just get him to master this ...

I'll report back in seven months.

How's everything on your end(s)? Pardon the really bad pun...

Autism: You Just Get Numb

Take another shot of courage
Wonder why the right words never come
~The Eagles

So we’re back. And everyone I run into asks the same question. How was it? Did you learn anything at Koegel?

Before I answer, I feel the need to qualify a bit. The Koegel Autism Center conducts parent training workshops for families utilizing a method of ABA called Pivotal Response Training (PRT.) PRT is an empowering mechanism for families, mainly because it trains them to capture teachable moments in a natural environment. (Think FUN ABA…) And we all know generalization of skills is the ultimate goal.

I’ve personally witnessed more than one child with autism strongly improve utilizing this method. One little boy who started intervention at the same time Jack did, responded so well that his family moved across the state and enrolled him in a typical preschool …. and never disclosed his previous autism diagnosis.

So for them, it proved to be the magic bullet.

For us, not so much.

I was first trained in PRT a couple of years ago and we’ve been utilizing it at home ever since. I signed our family up for the workshop in California, hoping there was something we might be missing. Maybe Andy needed to sit through the training too? Maybe we were doing it wrong?

Turns out we really weren’t. The staff was wonderful, supportive, and confirmed that we are doing a great job with PRT at home.

An A+ performance.

But Jack still isn’t really talking.

And the name of the workshop we attended is First Words …

And they tell you in this workshop, for best outcomes, the ultimate goal is to get your kid talking by the time they turn five.

Five.

Tick-tock, tick-tock…

Come September, unless Jack begins to converse,

we’re screwed…

And that, my friends, is a tough deadline to swallow.

I attempted to swallow while I sat across the table at Chili’s, sipping my second margarita and assessing the situation with Superdad Andy. (It was the evening following the first day of the workshop in California and we were both way, way, way down.) The realization that we were really doing all we could do, and it wasn’t bringing about the normal results, hit us both hard. My hot tears bounced off the mosaic tiles as I looked at Andy and said it. That thing you just shouldn't say ...

“He’s never going to talk, is he?”

It’s like, all of the sudden, we both just knew. Realization seeped in.

But I suppose clarity helps you focus. Brings about perspective.

And clarity reminds me that the one thing I do know for sure is that, above all, we’re still a happy family. Life and love really is about so much more than words.

It’s about smiling at each other in the rear-view mirror while driving down the street.

It’s about a warm little hand, reaching out for mine.

It’s about a sweet-brown head on my shoulder.

It’s about pure joy, chasing each other down the beach until your lungs burn and your face hurts from smiling.

Those are the moments that keep us going.

Be I've got to honest. It would help to have more….

Words, that is…

Deadlines and realities aren’t quite enough for me.

I’m not giving up just yet.

Next?

Amanda and Jenny: Meet Melanie

Back from vacation and there's so much to say. It was nice to escape, but I'm happy to be back home. In addition to washing 5,000 loads of dirty laundry, I've got a great deal of catch-up blogging to do.

Think I'll start slow. Pace myself....

As I'm sure you are already aware, the autism world is absolutely buzzing this week about certain drop-dead-gorgeous celebs and their paradoxical positions and smackdowns.

Not that you asked, but I'm thinking autism mama Melanie Roach models a position that we all should emulate. Need to smile? Do yourself a favor and check out the following interview from NBC's TODAY Show:



The dream is still alive Melanie. We're dreaming with you!