What Spirit would say if he could...

Welcome to my world.

You'll find that there are some things that are the same as your world and there are many things that are different. So if you think you have what it takes you can step into my world and how I see things.

Spirit Colored Glasses:

My world can be; 

Confusing for me.

My head doesn't process things as fast as yours so if I look confused, or I don't look like I "registered" it probably hasn't. 

Confusing about what is expected from me.

Lots of steps get muddled up in my brain. So speak slowly, make sure I understand and then guide me through the process. I can succeed just like you, I just need a little more help. PS I'm worth it!

Confusing about how I should be acting with different environment and social demands.

Processing environmental and social information is very difficult for me, it's not that I can't do it, it's that it takes me more time and a little bit of coaching to help me react appropriately. Don't be afraid to coach me. (Away from the eyes of my peers) That way I can make adjustments. I will look to you to see if I am doing it right. A thumbs up and some encouragement are all I need. Remember, I don't see things the way you do, so you may have to get around your own idiosyncrasies 

Painful for me.

Stimulus are often overwhelming for me, and when I am overstimulated things become painful for me. If this happens get me outta there. Get me to a "safe place" where I can reset.

Overwhelming for me.

If you see me flapping my hands, covering my ears, or if I look like you look when you hear nails on a chalkboard, things are probably getting overwhelming for me. If this happens, get close to me, meet my eyes and ask what I want. I can usually tell you what I need. But if you ask, make sure you are prepared to meet my needs, because if you can't (or more likely won't) then I will meltdown even faster.

Scary for me.

Situations that seem "fun" to you can look like a minefield to me. Please understand that I can usually get to some point that I will try new things, but this could take a lot of time. (Years even) So don't expect to get me into something new without a lot of prep work and everything going exactly.

Lonely for me.

It's lonely to watch everyone get the joke, and not. So I may laugh harder and louder to compensate. It's lonely to see people get moved by a musical number and not know why. So I ask "are you sad?" It's lonely to see people I think like me because we played yesterday, ignore me today. 

Too busy and too fast.

Everyone seems to be moving much faster than I can. As a result, I am always feeling a little rushed and anxious. Please be patient, I want to be included, I just need some help. I love being included and the way it feels when everyone takes a little more time for me.

I hope this helps you see what the world is like through my eyes. I sure am glad that you are a part of my journey living with autism.

Love, Spirit

10 Things Spirit Wishes People in His Circle Knew (Part 1)

Dear Friends and Family,


Guts is writing this letter because I can't...yet, but please take note because he knows me and he knows Heart, and they are my life and would like some people that want to know to know what hey need to so here goes:

I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

What this means for those on Team Spirit: This is hard for Heart and Guts, because although they don't want me to be defined by my autism, they would also like you to take note that there are times when I can no longer fight off my autism. I do a pretty good job most of the time, but it is nice when others understand that my behavior may be outside of my control. I don't have a wheelchair or a cane or something that physically represents my autism, in fact most people that see me on a limited basis have a hard time telling I have autism at all. This makes it that much more important for those that I know to educate those people that don't know. I don't want to seem over reactive, it is just more difficult for me to fight off the autism when other things are hammering on my sensitivities. You probably experience similar situations in your life when you are exceptionally tired, hungry, stressed or nervous. It is hard to react appropriately at these times for you, now imagine that being the case ALL of the time. It's hard, and I know I can be frustrating, but if you are patient, understand that I am having a hard time fighting it off, and take some extra time, I can (most of the time) get back on track. If I can't, call Guts or Heart, they'll know what to do.

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, and they’re mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become over stimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

What this means for Team Spirit: Smells and tastes seem to be my biggest misperceptions loud noises are a little hard too, but if I am prepared or they are associated with something I like to do, I can usually fight off my autism. Keep in mind that just because I can, doesn't mean that I will. I try to participate as much as I can, but there are times that I can no longer handle all of the over stimulation. There are signs that I am getting over stimulated, I become withdrawn and seek an activity that can "reset" me as Heart and Guts put it. I may also ask to leave. Please don't take offense. I am not trying to be anti-social, rude, or inconsiderate. Quite the contrary, I am trying to avoid making a scene and moving to a meltdown. If it looks like I am getting overstimulated, removing me from the situation for a while is the perfect remedy, keep in mind this may not always work, but it's worth a shot. :-)

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Spirit. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Spirit. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

What this means for Team Spirit: So many times people think that I am CHOOSING not to comply with their requests. Please remember that I am fighting with myself constantly. My autism is a constant uninvited guest in my head, I don't want it there as much or more than you do. Please don't think that I am being rebellious because I want to. What I want is to keep that uninvited guest at bay for as long as possible. This means that I have to understand completely what you want, and even then I may not fully understand what you want. I promise to give it my all, if you will promise to be patient and understanding when I don't fully succeed, but hey, that means I succeeded a little right! Let's celebrate that, the more of a positive experience that I have the better chance you will have of getting me to try it again. Remember that uninvited guest hates failure, and what you perceive as "progress" may just translate into failure to him. So keep it positive and upbeat, and I will be much more able to keep him at bay.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

What this means to Team Spirit: I'm getting better at this skill! I can usually tell when someone is being funny, or trying to be sarcastic in a funny way. I have a much harder time when people don't explain the sarcasm right away, or they do it in a semi-mean way. Sarcasm is inherently mean anyway and it is hard to understand why anyone would be mean to me, especially those that are closest to me. I know that "good natured ribbing" as Guts calls it, is a part of some people's everyday interactions, I'm just not in a position to interpret it, and thus I react very negatively to that type of interaction. Inference is also very hard for me, you may look in my room and say "This room is a mess." I will not infer that you are telling me that you want me to clean it up, I will simply agree. (Thinking you are stating a fact.) So be simple and be direct. Take the short route to the barn, as Guts says, and we will understand one another perfectly.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

What this means for Team Spirit: Patience, Patience, Patience. My vocabulary is limited, but if you wait on me I will tell you how I am feeling. I only bottle up when I am over stimulated AND expected to describe my feelings. Most of the time I will tell you. I also am very good at multiple choice, if you give me some choices and you get it right I will usually confirm your suspicions I am almost always using Echolalia to fill the spaces in my conversation or to withdraw from my conversations. Let me do it, unless you need something from me directly. My limited vocabulary and high stress/stimulus situations drive me to it as a coping mechanism. If you pull me out of it, over and over, you aren't allowing me to cope with whatever is stressing or stimulating me, and that can lead to a meltdown situation.

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.