A Cure for Asperger's?

Well... here we are, several years down the road.

It's time to update ye olde blog - and the story of NJ.

First, we suspected he was Aspergian about four years ago, when his teacher suggested we get him checked. We never did get an "official" diagnosis, but NJ went into social-group therapy and occupational therapy... oh yeah, and speech therapy. He was fully therapied. 

He worked his butt off, and made great strides. As he matured, he continued making strides -- including making a true best friend, doing sleepovers at other kids' houses and all the rest.

Still, the same social awkwardness persisted. He wasn't showing a great interest in other kids.

But slowly, surely, those things started to change. He forged a bond with the boy across the street, and discovered Pokemon. They would play together for hours. And while their bond was unique, it was real.

We saw progress. The intensive therapy and early intervention seemed to give NJ just enough awareness to start making those connections -- tenuous as some of them were.

We moved to a new state three years ago. His new school put him through a battery of tests -- the two main autism-spectrum tests, to be exact.

The testing went on for more than a month -- in class, out of class, in situ observation, and testing.

Finally, the results came back. Melissa and I sat there, slack-jawed. For years, we assumed he was Asperger's. Heck, he WAS Asperger's. We had already accepted it and moved forward.

And yet here we were...

Suddenly, he didn't test on the spectrum -- officially -- and didn't qualify for services under that diagnosis. 

Luckily (??) he does have a slight hearing impairment and that opens the door for whatever IEP we and the school agree he needs.

But still, while he might not qualify as Aspergian, officially, we know that he -- like myself -- has some of the traits (and most definitely not some of the others). And we'll continue working with him as needed to help him reach his full potential.

Looking back, I thank God we diagnosed NJ ourselves and began therapy immediately. Had anyone at the time told us he was not on the spectrum, we might have remained happily in denial about his needs -- and kept up the pretense that everything was "normal."  And we might never have gotten him into social group, which he obviously needed. Nor would we have had the term Asperger's to prepare scout leaders, teachers and other adult supervisors for NJ's unique personality and approach to life.

I will continue posting updates here... but I am not sure where this is going. Thoughts welcome. I'm sure a lot of other parents have found themselves in this same, strange boat.

How important is a diagnosis, really? And can Asperger's be "cured" through intensive therapy and the natural process of maturation?

Would love to hear what some of you have to say... if anybody's still out there!

Asperger's by Any Other Name...

Well, it has been a long time since I've written on this hear blog.  Many things have happened since then - much water has passed beneath the bridge.

They finalized DSM-V, for starters.  Hey, Asperger's no longer exists, folks!  How convenient.  A whole community, with decades of historic diagnostic and therapeutic modalities built up, has been virtually erased by the DSM committee.  

I believe they have made a really large mistake, and that they will eventually be forced to address that mistake.  But that's for another time.

Meanwhile, we've gotten some very interesting news about NJ.  Not long ago, we moved and he started at a new school here in Maryland.  This school put him through two rigorous autism tests, over the course of about two months.  They supported this with round after round of behavioral observation and classroom diagnostics.  And they came back with some rather shocking news.  According to all of their tests, he didn't actually fall on the Asperger's/autism spectrum.  He has tendencies, but apparently they weren't severe enough to qualify for a diagnosis. 

Luckily, he has a hearing issue that serves as a gateway "issue" in terms of services, and the school can provide whatever he needs in terms of social group, stress-management, etc., based on that.  Thank goodness for loopholes.

In other news, NJ is finishing up the entire Potter series.  He's on the last book with his mother.  He has started his own comic strip and published it on his blog.  He has made a handful of real friends, including two "best friend" types - one a boy and one a girl.  And he's made progress in school, pulling good grades and not getting into trouble, and sometimes - blessedly - reporting actual enjoyment of school.

However, as he turns the corner into double-digits (just turned 10), it's as clear to me as ever that NJ is a unique individual.  He's not neurotypical - he's noticeably different, even if subtly at times.  And that, in all seriousness, is a beautiful thing.

The world needs all types, and NJ brings some serious gifts to the world.  He has an intense sense of justice, which is very typical of the non-neurotypicals among us.  He's very courageous - willing to speak up and in front of a crowd, even in times of stress.  He's also mischievous.  At a recent school concert, the kids were filing off stage and he snuck up to the microphone, grabbed it and made an impromptu fart noise to an auditorium full of hundreds of parents.  The place nearly fell down from laughter.  I was mortified but later got a great laugh myself.  

My point on this New Year's day is this: the label never really mattered.  Whether he's technically on the spectrum or not is hardly the point.  The point is, he's a kid and he needs certain things from us as parents.  Our job isn't to label, and categorize - it's to help the child, not the diagnosis (or lack of one).

So for all the aspies out there - diagnosed, undiagnosed or fully in the closet - I wish you a happy new year, and a year of strength, dignity, purpose and confidence in your identity as someone the world needs.  You have a gift inside and the world needs that gift.  I hope for all of our sake that I, you, NJ and everyone else finds the courage and clarity to bring some of those gifts to the world this year.  God bless, Jay

Harry Potter... 24/7

Well, it's official.

NJ has discovered Harry Potter.

As is my habit, I regularly skim the aisles of the local bookstore for new titles that NJ might enjoy. My wife does the same. And together we've provided him with some pretty solid material through the years.

Mom, I must say, introduced him to his first opus - Jamberry. The two of them literally wore that book out. The covers fell off. We had to buy a new one.

Then it was onto Archie comics. That was my doing. Most recently we also introduced him to the world of Diary of a Wimpy Kid. He knew Roderick's rules long before they reached the silver screen.

And now, it's Harry Potter.

Not long ago, we rented the first HP movie and watched it with the boy. He fell in love. His passion for detailed systems... for ordered social settings... for magic... for the ongoing struggle between villains and heroes... it all made him prone to Harry Potteritis.

He has come down with a chronic case, I assure you.

Suddenly, I am conversant in that crazy lingua potter, and find myself in 20-minute conversations with NJ regarding Dumbledore's new spells... the "Balsisk"... Herme-OH-nee, as he calls her... etc.

Watching him enter this new world makes me wonder at how magical his little mind really is. He can just flick a switch and "get" a whole mini cosmos in about 15 seconds. He can ascertain the rules, the dynamics, the whole thing more quickly than I figured out what a muggle was.

We're just getting started on this journey. But it all makes me wonder...

Harry Potter is somewhat misunderstood in the world of the muggles. Others don't get him.

His own uncle - the big jerk - even calls him a freak!

Harry, however, is much smarter and more gifted than all of them combined. He harbors a great destiny within him. It's just that he needs someone to help him unleash that magic, so that he can use it to help save the world.

That someone eventually arrives in the form of Hagrid, a large, hairy man with good intentions... but bad personal hygiene.

Hagrid shows Harry the world of Hogwarts. He steers him around the halls of the school for wizards, and helps him avoid disaster, although Harry must experience headwinds and overcome challenges all on his own.

I'm sure NJ can relate to Harry on more levels than one. And... please feel free to call me Hagrid.

Peace,

Jay

Aspie Wins BSA Pinewood Derby

My apologies for the hypey headline... but I just couldn't help myself.

I have a little "Aspie Heroes" sidebar on this blog. And it should include my son, NJ.

This past weekend, he took 1st place among dozens of Cub Scouts competing in the Osceola District Pinewood Derby.

For anyone who doesn't know... The Pinewood Derby is an annual event sanctioned by the Boy Scouts of America. The Cub Scouts participate by crafting their own homemade wooden cars and racing them down a gravity-fed track.

Each heat involved four race cars. And they keep racing until a champion emerges.

Before I get to what happened this weekend, and last weekend... let me give you some background.

I was a Cub Scout myself. And I remember my Pinewood Derby experience like it was yesterday. For whatever reason, I crafted my car almost entirely by myself. The BSA gives you a kit that includes a square block of pinewood, about 7 inches long with grooves for axles. You get four nails for axles. And you get four plastic wheels. Other than that, you can do whatever you want within the rules to make your car the fastest.

I worked hard on my car. And then I went to the derby all excited. And my car came in last two races in a row and was summarily eliminated. In fact, it didn't even make it all the way down the track - either time!

For a seven-year-old, it was totally disappointing. And then I learned that like ALL the other boys there were using graphite to lubricate their wheels. I kind of knew what graphite was - the stuff in pencils? But I had no idea what this had to do with anything viz race cars.

As it turned out, the other boys had worked on their cars with help from their dads. This is an acceptable - and encouraged - arrangement. My dad preferred for me to do all the work myself, to build character I suppose.

But the sting stayed with me for, oh, about 33 years.

Until this year...

Now. I know you're not supposed to live through your kids. I know you're not supposed to carry stuff around with you. And I'm here to say: that's not what I'm about to describe.

Instead, NJ and I agreed to work hand-in-hand on this project.

He would have to be involved in EVERY step of making the car. Designing. Cutting out the body shape. Sanding. Etc.

First thing we did was have NJ sit down with a big piece of blank paper and design his car. He had been thinking about it. "We're going to make it look like a skateboard," he said. I taught him that you need the side view... the front view... the top view... So he drew the different views of the design.

And he even drew the design details - the paint scheme, etc. I mean, we're talking Frank Lloyd Wright here people! ;)

But the plans were good. And we used them to cut out NJ's car body.

While I did let him practice using the electric jigsaw on a piece of wood for a minute, I did the primary cutting of the body. But then I turned him loose with the electric finishing sander to shape and smooth the body. He was REALLY good with the sander.

Next we polished the axles. We polished the wheel hubs. NJ painted the car with his mother while I was away on business.

The next morning, we went to the Pack 308 Pinewood Derby. And lo and behold... NJ won every single race!

He took first place, and was rewarded with a nice big trophy. They had Olympics-style music playing. The spotlight was on him and the other top-3 finishers. I mean, it was a big event. There were hundreds of people in attendance. NJ literally skipped away from the racetrack with a smile on his face.

And I couldn't help but feel that a big circle had been closed. I got the chance to give NJ the Pinewood Derby experience I never had... and it played out beyond our wildest dreams... beyond anything I could have planned or imagined.

It was, in short, a God thing. And so is NJ.

A Method to Get an Aspie to Do Something He Might Not Want to Do

I've always had dreams of being a father... probably starting in childhood, actually.

Among them has been "having a catch," in Field of Dreams parlance.

Well, as it so happens, getting NJ to "have a catch" can be like opening a really fresh Chincoteague oyster. He resists and you can get to feeling pretty clumsy by trying to get him to open up to the activity.

But I simply insist that my boy plays some form of baseball with me. Dammit, I helped to change his first poopy diaper. I walked the wooden floors of our Annapolis craftsman till 3 a.m., night after night... with him in the baby sling. Because he did NOT appreciate stillness when he was trying to get his beauty sleep.

My point being, the boy OWES it to me (I know, I know... it must be a guy thing).

So I took NJ down to the local Sports Authority to buy a bunch of plastic baseballs and a practice bat. We also bought him a glove.

And it was down to the local park to start a'practicin'.

As I coached and cajoled, he would tighten up. I would back off. And try coaching a little more. He kind of took to it, and began bapping the balls pretty good. Our last round he hit about 75% of the balls - including some admittedly unofficial "home runs."

But his patience wore thin. He kept asking: Do I HAVE to practice? I would simply say, Yes, NJ, you do. Let's keep hitting.

We did a little more and took off before he soured on the whole experience...

Fast forward one week...

We're in the back yard.

Round 2 of the Cal Ripken Jr. Father-Son Instructional League Playoffs 2010!

Except this time, NJ loses patience very quickly. After just a few swings, he started asking when it was going to end.

We had been playing "Cloudy with a Chance of Meatballs" on the Wii beforehand. And he wasn't pleased with being pried away from the game.

So I told him: "Hey, let's pretend the balls are gummy bears... and your bat is a Hot Enougher!"

A bit of background... In the video game, the character uses a kind of torch (the Hot Enougher) to melt gummy bears.

His eyes lit up and he was INSTANTLY transformed into a willing participant. It was amazing!

"What's that?" he would ask about the ball in my hand.

"This is a gummy bear!"

"And who's it going to attack?"

"It's attacking Sam!" (a character in the game).

"Here comes! Look out Sam!"

Dad throws ball. Um, gummy bear.

Kid WHACKS ball with bat. I mean, with the Hot Enougher.

And the thing goes flying.

Pitch after pitch, we repeated the same process. I played into HIS interest and turned our practice session into a real game, with imagination, with fluidity... and tailored to where his mind really wanted to be at that moment.

I actually wound up being the one to shut it down. He would have kept on hitting into the twilight. And what was weird was, he was easily hitting balls he would have missed before... and really roping them well over my head.

I learned something. While we often point out how Aspies don't think enough about what other people are thinking... I sometimes don't have enough consideration for what HE'S thinking.

It's so easy to write it off as some kind of "special interest" that I shouldn't get caught up in - or that I should perhaps even discourage.

BS. Nonsense.

He's got a right to his thoughts, even his little obsessions.

We all have them. Except in adults, and with certain popular interests, we usually call them passions.

I learned I can play to NJ's passions, and meet him halfway.

And somewhere in the middle, we can have a LOT more fun than we would have staying in our own little worlds.

Peace.