Superman Should Wear Spirit Pajamas!

Superman leaps tall buildings in a single bound, is bulletproof, lifts buildings, cars, small islands, can turn back time by flying around the Earth at light speed. He can also save the world a thousand times over and all before he has breakfast. In a word Superman is AWESOME. But there is a problem. Anyone that knows about Superman knows that irradiated pieces of his home planet a.k.a. kryptonite make him weaker than some old lady in a wheelchair. No more buildings, no more bullets, no more flying. In fact, kryptonite makes Superman less than a man.

So as long as Superman isn't around kryptonite he's being Superman.

And this is what leads me to believe that Superman wears Spirit pajamas. Ya see, Spirit's kryptonite is with him always. It courses through his veins and into his brain and tries it's damnedest to make him weaker everyday. And yet Spirit still makes it through each day. He writes essays about the Statue of Liberty, memorizes the Articles of Faith, writes in cursive, knows his times tables backward and forward, struggles through reading comprehension, and today was awarded the most improved student and the Brilliant Bobcat award at his school.

Some people look up to those that are invincible, those that seem to go beyond the human capacity. Not me, the impressive ones are the ones that have every excuse, not to try, they have every reason to pack it in, and frankly who would blame them. If I spent the better part of my life fighting off the attacking environment around me, I'd be done in six seconds flat. But not Spirit, and that's what makes him worth admiring. Superman's gifts come because the sun comes out each day, while Spirit wakes up with his demons waiting for him each morning. You tell me who's stronger. 

So with all due respect Superman, you ain't got nuthin on Spirit. You wanna impress me? Try saving the world with a big hunk of kryptonite wrapped around your neck cause that's what Spirit does everyday.

You all thought that big S on his chest stood for Superman didn't you. Well Superman and Spirit know better. It stands for Spirit. The little boy with the strength to fight off the kryptonite inside of him and impress the hell out of everyone.


That's my boy! My Hero!

Hulk

You know, there are times when something just clicks. Heart and I were discussing this weekend and the overloads to Spirit's system and she expressed herself this way:

"Some days it feels like we are living with the Hulk."

Truer words were never spoken. Here we sit watching every move Spirit makes. Wondering if the wrong expression will turn him into the raging Hulk. It's interesting, the parallels are uncanny. Bruce Banner is a mild mannered science guy with a pension for keeping calm in extreme situations. He dedicates himself to a regimen that keeps his other self at bay, all while trying to make sense of a senseless world.

Spirit is exactly the same. There are times when I can see in his eyes that the Hulk is bubbling below the surface, threatening to lay waste to whatever he can get his hands on. One false step and Spirit becomes a big green rage machine. Eventually the Hulk calms down and we can all breathe a little easier, but for a certain period all we can do is wait him out. But I like Captain America in the Avengers can get very simple, very easy commands into the rage and help him to come out of it. Sometimes I just want to look at Spirit and say: "Hulk, smash." I mean why the heck not, sometimes in my life I'd like an excuse to go nuts just because.

So you go Spirit, and just like the Avengers, Heart and I will take the good with the bad, because eventually Bruce Banner learned to control the other guy and then he became an unstoppable force for good, and I think your worth the wait.

Days Like Today

I love to golf. I'm horrible at it, but I love it. I have played hundreds of times and my game has improved, slightly, subtlety, almost imperceptibly. In fact if you didn't know me or hadn't golfed with me you would never see the improvements.

If you have golfed you will be able to identify with the feeling I am about to describe. After shanking shot after shot into the trees, the lake, the next fairway, and even into houses close to the course, the inevitable conversation starts in your head. It goes something like this:

[After shank #6]
"Maybe I should take up bowling. There are tons of fat guys that do that."

[After shank #15]
"They don't seem to have a problem. It can't be near as frustrating as this stupid game."

[After shank #22]
"Yeah, bowling! That would be the perfect pass time."

[After shank #??, because you quit counting after thirty something]
"That's it I'm throwing these #@$% clubs into the next body of water I see!"

Then you line up at 18, it's a long par four and because you are so exhausted from chasing your ball and so fed up with this entire game you begrudgingly pull out the driver. You know its going left...or right...or way left...or way right, but right now you don't really care. You tee up your ball, not giving any thought to height, look down the fairway with little to no regard for your alignment, hall off and smack the ball with everything you've got. Again, not giving one hoot where it goes.

Your buddy exclaims, "Nice shot!" And since you have been taking his ribbing for the last 17 holes you decide that an acceptable alternative to throwing your clubs in the lake will come with wrapping your driver around his head. You are just about to do so when your eyes look up and you see it. Your beautiful shot sailing down the middle of the fairway, bounding toward the green, and settling just shy of the putting surface. You smile.

[After nice drive #1]
"You know what, all I need to do is get out more and I could really be good at this game."

That was our day today. Spirit was in church, and after the week we have had I was ready to chuck the clubs into the lake. Yet there he was, reverent, participatory, angelic. I don' know where it came from, I don't dare ask, but like the drive that bought my next round of golf, today bought me more time. Time to cope, time to understand, time to reflect, because Spirit is exactly that, the Spirit of our house, and there is no one on this planet I trust more than him.

So well done Spirit, you just bought another 18 holes.

Medical Diagnosis

Spirit, Heart, and I have spent the last three weeks navigating the medical diagnosis process. It's basically the equivalent of the SAT test. Ask the same questions hundreds of times in a different way to see if the answers consistently point to what everyone is seeing. So two days ago we sat with a psychologist provided by the school district, and she pointed us to what we already knew. PDD-NOS (Pervasive Development Disorder Not Otherwise Specified) the autistic diagnosis equivalent eh...I don't know.

Here's what we know:

We know he has autism.

We know he is very high functioning.

Pretty much anything we thought we knew before. Interestingly enough you put yourself in this position that when the news drops you're like: "Okay, that's exactly what we thought it was." And yet through all the smiles, the quirky stories, and the familiarity of the situation, you're secretly hoping that the Psychologist in front of you is going to laugh a little then tell you that you are crazy. He is just a normal nine year old with some idiosyncrasies and he will outgrow it.

No such luck. I've never had some sort of a terminal cancer, never been given news that devastated me, the closest I've ever come was when I misheard my mother giving me some bad news about my cousin, and for about ten minutes I thought my Dad was dead. Yet as the smiling, understanding, charming woman sitting across the table from us indicated that our observations were correct, the lump in my throat got larger and larger. It doesn't matter how many times I played the situation out in my mind, when she confirmed what we already knew, my heart sank.

All I could think was, "what now?"

What now? Now we live by lists, we look for ways to control the environment around him we assist him in dealing with the constant attacks from everyday interactions.

I quote one of my son's favorite movies.

"We're about to go over a cliff aren't we?"

"Yep"

"Sharp rocks at the bottom?"

"Most likely."

"Bring it on."

So we're busy embracing the finality of Spirit's diagnosis.

Bring it on.

All A Matter Of Perspective

I've heard a lot of people, when describing activities to which they take their autistic children, they often expect and plan for a meltdown. Heart and I...well we're not really there yet. (Although we should be.) Spirit, Heart, and I, headed to the Eggs for Autism Easter Egg Hunt today. It was your typical hunt...booths, eggs, two thousand kids. I can see hundreds of dads with autistic kids chuckling to themselves. "Heh Heh Heh this guy thinks they aren't having a meltdown, what an idiot."

Well I have news for all of you know-it-all dads out there..."Sssssssuck it!" We did't have a meltdown...we had four, so HA! Yeah we had a meltdown, and then another meltdown, then another, and finally we got a balloon sword which he promptly popped on the ground under the pine tree. WELCOME TO MELTDOWN NUMERO QUATRO!

And meltdown number four can only be described as Mt Vesuvius meets the Big Bang Theory! KABLAAMO!

So laugh it up other autistic dads, I will be fully prepared for a meltdown anytime we head to an activity.

Suck on that!

Now on to the perspective shift. Among those that attended were some other "special needs" children. Special needs, I never thought I would be in THAT line, in that egg hunt, and not mistakenly being there. "Excuse me sir this is the special needs egg hunt, you and your son want the 8 - 10 year old hunt over there." Nope that wasn't us, there we were "belonging." It's a surreal moment when you actually realize that you are playing by a different set of rules.

The egg hunt started and I purposefully turned to see the 8 - 10 year old hunt...in a word bedlam. Spirit would have been land blasted and we would probably have experienced meltdown #4 early. Welcome to Holland Wayman Family, because on the other hand Brayden was with other "special needs" kids at the hunt and made pretty quick work of the eggs they had spread on the ground. So here we are, halfway between special needs, and the "normal" kids. That's where you will find the Wayman family.

I looked around the special needs part of the egg hunt and found Brayden to be severely high functioning compared to the other kids around me. These kids and parents were playing by the "special needs" rules, and the kids at the other hunt had the "normal" rule book. And here we were...no rule book for us.

"Here you go sir, here is your rule book."

"But ma'am you just handed me both rule books."

"I know," she says "Ya see both apply at different times."

"Oh," we say nodding. "Well great, so when do we use this one and when do we use that one?"

"I'm sure I have no idea," she says "I just hand out the books."

"Well who do we see about this?"

"Like I said sir I just hand out the books...next."

So there we stand not knowing what to do or where to turn. Looking around the special needs egg hunt knowing that he doesn't really belong there. Then casting a glance at the other hunt and realizing that he doesn't really belong there either. The only place he really belongs is here, with us, and with those that understand and love him.

No pressure.

Welcome to Superlativeville

I don't know if it is one of the tendencies of a child with High Functioning Autism, or if it is simply a characteristic of my son, but we have been living in an interesting town lately. The best name for the town  is Superlativeville. Spirit has been moving into the extreme of all situations. We had a little disagreement and I told him I wasn't going to play the game with him anymore. To which he promptly replied, "So you won't play with me ever again?" I tried to explain that I was simply talking about the situation we were in at the time, but he was very distraught that we weren't ever going to play again.

Welcome to Superlativeville, population: Spirit.

I have to keep this in mind as this tendency seems to be penetrating all of his interpretive and cognitive practices. Every interaction is very black or white, especially for those people that don't exist in Spirit's "box" as I like to call it. Spirit has a box, and that box is filled with people that he trusts, and he trusts them with his autistic tendencies. This is probably why we have such a hard time explaining to people that Spirit is HFA (High Functioning Autistic), he is so good at "turning it off" when he is placed in a situation full of people outside his "box" it is often hard for people to see the tendencies.

Spirit lives in Superlativeville, and that is why interactions are so difficult at times. For example there is a young man at school that either doesn't play with Spirit, or is passive about playing with him. This resulted in a conversation with Heart where he expressed that this particular young man "hates me." And there we are smack dab in the middle of Superlativeville. Thing is that all of the streets in Superlativeville run parallel there are no cross streets. Which means you are either on Best Friends Lane or Hate You Way. See what I mean, there is no cross street that a lot of us are on called Acquaintance Avenue. You are either on Best Friends Lane or Hate You Way, and the thing is that most kids don't even end up on a lane at all they are stuck watching Spirit from outside the city limits wondering why they can't seem to connect with anyone inside Superlativeville. The thing is there aren't any phones in this place, just a bunch of parallel streets leading to nowhere. Heart and I have become very familiar with many of the streets in Superlativeville. We have found that what we thought was Maybe Later Blvd. was actually a toll road to Never Going To Happen Lane, and be careful because that toll is one major meltdown. As Heart and I try to find a map to this happy little place, we find that the roads are always changing and the landmarks that could once be counted on to direct us are now completely changed.

All the while Spirit is trying to navigate the roads himself and finding it very difficult. Partly because he hates it when people try to construct crossroads. He is happy in Superlativeville. I mean let's face it if someone loves you then you can predict their behavior, if they hate you there is a similar predictability. It's those pesky cross streets that leave things up to interpretation.

I hope to one day get the map to Superlativeville, so that I can effectively assist Spirit in navigating its streets.

For now we are still looking up.

Back on the Horse

So many times I think this life is meant to distract. Let me rephrase, what I meant was: so many times there are distractions that tend to...well distract us, from those things on which we should be focussing. Such has been the case with me over the past month. Distraction after mind numbing distraction have been parading through the life if Heart and myself. We attempted to jump into this autism thing feet first and created this sink or swim mentality. (Looking back it wasn't the best strategy.) We sank, and sank, and sank some more. We called the insurance company and were very politely told to "go jump in a lake" when it comes to diagnosis. For all of the "wonderful resources" that are available in our home state, it seems there are plenty of people that are pointing in different directions, yet none of them are willing to walk a little way down the path with you and let you know that it is all going to be alright. In fact, I feel like when you talk to people about it they give you this, "well what in the world am I supposed to do with that information" look. 

Thing is, Spirit doesn't look different, he doesn't act all that different either. Most people would look at him and say, "He's just quiet and keeps to himself." It's funny when you try to explain that he is different, people try to explain it away. "Oh he's not that different." or "It's not as bad as you think it is." Ok all of that may be true, until he has a meltdown, or the kids on the playground are mean to him and he doesn't understand why. The point is, I have been watching this kid for close to a decade and I am pretty in tune with how he will react in a given situation. So just trust me when I say, "He's going to react differently then you think he should."

Yet amid all the tears, frustrations, and downright nerve racking moments there are times when I see Spirit for who he is, and it is in those times that I am grateful to be able to share this unique experience with him. I heard a song by Jason Mraz and it speaks to how I feel when I look at Spirit.

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.

I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

I'm really not "post lyrics to a blog guy" but it's my blog and I promise these will be the only lyrics I ever post. And I think my new theme is "I'm still looking up."