Saturday, April 14, 2012

A Chink In the Armor

The world is coming to an end. Or more realistically, there is a tiny crack in one of the screens of the Nintendo DS.

Joey found it this evening when Andy wanted to watch Sonic the Hedgehog instead of playing Wii. After a hard day of baseball and park, Joey wanted to relax with his World 8 Castle on the DS. Some days, you just gotta have some Luigi.

What he found was a crack. We already had been plagued by the infamous hinge crack, but he accepted a clear case as a quick fix. But a screen crack isn't so simple. He was devastated. He curled up next to me, playing his game, in tears because he was so upset about the screen being cracked, and perseverating on it.

"It's a crack. It's broken! My DS is broken!"

Sore at heart that I could not fix this, nor can we afford a new one right now, I sent the child up to his father. JoeyAndyDad did his best, cleaning the screen and the game, making sure everything still worked.

Joey came down again, still sniffing, but with better words, such as, "It' just a tiny crack!"

Then he curled up next to me, and said, "Daddy did his best. I appreciate him trying."

That's my boy.

Friday, April 13, 2012

Adventures and Realities

The sky is high and blue; only the small, puffy clouds that announce a glorious spring day punctuate the perfection. It's cool and breezy, and we have no place we have to be-- no school, no sports, no therapy. I so wanted to go to the zoo today.

When the boys were small, this was the kind of day that would find us on an adventure. We'd pack ourselves some snacks and drinks and spare clothes, the rest of the travel kit, hop in the car, and go explore the world. Zoo, beach, museum, mountains, Jamestowne, park, aquarium, Dinosaurland, somewhere new and interesting and fun. We'd look for shark teeth or find sheep at Wakefield or ride out to feed the goats or chase chickens.

No, these outings were not the same as one might have without an autistic child in tow. Joey might not see as much or understand as much or even care as much; but we were out and about and doing.

It is a life we have left aside the road. With bolting, I can't go with two boys anywhere by myself anymore. We must have a ready set of hands and legs to run in case of a sudden anxiety attack. Going anywhere outside a 20 minute drive now involves huge preparation for both boys, with very limited possibilities for success even so. Anything interrupting comfortable, predictable sameness risks major consequences. It is no longer safe for my boys to have only one adult with them.

Even when they were little, not every outing was a picture of perfection. We have pulled Joey about a zoo in a wagon when he refused to walk. I have sat on benches with Joey and had Andy wait for calming or hunger to be appeased. There was the infamous bolt at the Renaissance Faire, when Joey was being chased by fully costumed knights. Thank goodness some kind soul managed to watch Andy while we got Joey out of the woods.

But there was also the trip when the budgies landed on our sticks and we got to let them, and feed a giraffe. There was that beautiful first time Andy saw dinosaurs, and his face was alight with dreams. There was the trip when we watched rays glide through the water like birds. There were happy lunches in Williamsburg, smiling faces on 15th century boats, and happy watching of orangutans and playing on giant pizzas. They may not have all been rousing successes, but at least we learned to try.

Now, I think hard before I even take them to the park. Joey wanders about with a shovel or spoon, writing in the air and occasionally shouting things at random, or roaring like Bowser until the other kids steer clear of him. Taking him to a different park can be overwhelming, as he displayed all too clearly just yesterday. Is it worth all the anxiety and stress? There was a time when I answered yes. That was before anxiety meant Joey might run into the street.

Still, I so wanted to go to the zoo today.

Ryan Gosling Friday: Go Ryan!

Tuesday, April 10, 2012

Ten Years Ago

Ten years ago, I was a brand-new mom of a beautiful, squishy, soft baby boy. When I first touched his cheek, it was so soft, it was like touching nothing at all. My Joey came into the world via emergency c-section, precisely at 8pm. And who could not love that beautiful, smoochy Buddha Buddy?

It's hard to imagine loving someone more than the moment my Joey came into the world. Until the next moment came, and we all loved him even more. Then the next moment came, and we loved him even more...

If you have never had a newborn in your arms and sniffed that newborn baby head, you cannot possibly imagine the true meaning of the universe; until you smooch that baby head, you cannot imagine the totality of existence. There is nothing more life-changing than the real understanding that life is more than just you. That the cosmos is bigger than just you. Not just know it. Understand it.

I had no idea how much I would learn from my Joey. If I had known, I would have had him years sooner. And he would have a lot more siblings.

When Joey was born, my mom said I would be amazed how fast the time would go. She's right. I'm staggered. Time slips through our lives with no turning back, and the best you can do is hug your dear ones tight and enjoy the ride. Fortunately, Joey still loves to be hugged. And smooched. And squished really, really good.

Happy Birthday, Buddha Buddy. You are my Joey-Boy, forever and ever.

Monday, April 09, 2012

The Big 1-0 tomorrow!

Am I ready for Joey's birthday?

Why, yes. Yes I am.

Being Aware: What Does Autism Look Like?

With autism awareness month upon us, one of the questions I often get from those not familiar yet with autism is, what does autism look like? There are several different reasons for asking. Some folks want a list of thing to "look for" in their own family and friends, for a sort of self-diagnosisof things they see. This is a difficult reason to answer, because autism does not manifest in one single way; every autistic person is unique, just like the rest of us.

Also, when I start making that list, I am often interrupted by comments such as "well, I do that, and I'm normal! (or not autistic!)" because so many of the red flags are not a matter of doing or not doing, but a matter of degree. I wind up in the discussion of the difference between a tantrum and a meltdown. It is hard to explain to someone who has never seen one or the other. Where does one draw the line between "very focused" and "hype-focused"? Sometimes it is not so obvious. And some people are just not very bright, and trying to tease the knife edge between them is useless. Sometime you just have to say, "yes, I know you really like cats, but it doesn't get in the way of you doing other things, like eating." Which isn't the boundary at all, but at least they get the idea.

Then there are people who ask this question because they want to look at random strangers and diagnose them. After all, with many disabilities, you can see the person is disabled. They have visible differences- wheelchairs, for instance. Or distinctive facial features. Also, I get a lot of comments about how Joey doesn't look disabled- especially when I pull into the handicapped parking spot and get out our hangtag.

Autism is an invisible disability. You can't look at someone and say, "oh, s/he must be autistic!" You need other cues. That is something to keep in mind as you walk around in the wide world- just because that person doesn't look disabled, doesn't mean they might not have special needs. Be prepared to meet them so they can join in the working of the world. After all, you want your special needs met, right? In fact, people who don't meet them often get labeled very quickly in your mind as a person to steer clear from, right?

Anyone you meet might or might not be autistic. Autism occurs in people with or without other disabilities. Because autism is a pervasive neurological disorder, other disabilities can be bundled into the issues. Or not. Consequently, autism looks different for everyone- as uniquely as you and I look from each other. Autism is a diagnostic label related to certain behaviors and deficits; it may not even be a single condition or state, but a variety of pervasive issues that have similar results. Social connection/social skill difficulties, communication disorders, issues of movement. Neurology is pervasive in our bodies, so anything inside or out might be affected- sensory systems, digestive systems, respiratory systems, endocrine systems... I could go on.

So there is no one way autism "looks". I can only tell you what it looks like for us. And for us, JOey is the ultimate face of autism; autism is intrinsic to who Joey is and how he experiences the world. Watching him, listening to him, accepting him helps us to have new eyes and see from new angles, to understand the world from a point of view we could never have imagined without him.

What does autism look like? It looks like birthday parties and video games and days at the beach. It looks like grins and giggles and sparkly blue eyes. It looks like round rosy cheeks and running around the bases. It looks like homework and balloons and tricycles. It looks like a boy, growing up fast.

To us, autism is a roller-coaster, much like raising any other child, with the difference of the extremes. You notice the difference when you see Joey next to his peers; the things they do oh-so-easily (such as, say, talking and walking), are not as easy and free with Joey. But when you just have him, can you see it?

Well, can you?