I'll Find You

You fought off the fever as best you could, but the medicine hadn’t kicked in and it was apparent that your senses were even more exposed than they usually are. 

You shivered in the lobby of the photo studio begging your mother and I to take you home, as I prayed that the medicine would take hold and assist your body in fighting off the fever. 

We had planned on the pictures for months now and rescheduling was a hard option that we were staring directly in the face. I wasn’t counting on the photographer. Here we were smack in the middle of one of your more epic meltdowns, and he came outside, and asked if you would like to take pictures outside where it was warm. 

It was so simple, so unnecessary, and yet he came your way, and you started to tame the monster inside of you. Your eyes were red, your arms crossed in a protective stance. Guarding yourself from the things in this world that constantly assault you. You were still closed off to the world, but we came to you. I let you lash out at me, as you usually do, and he came with an olive branch. I promised you a long time ago that wherever you go, I would follow and find you when the monster came out to play. I am thankful today for the help of a stranger. 

Thanks Luke

Explaining the Unexplainable to Spirit

"I'm afraid to go to school," said Spirit.

"Why's that pal?" I reply.

"I don't want to get killed."

So much of this life we spend time focussing on the menial, we scurry around involved in the thick of thin things. Trying to make sense of the confusion. Then something happens that shines a light on the importance of seeing through the confusion. I won't focus on the tragedy, I choose not to give fame to the heinous acts of a disturbed individual, but I do look to understand the plan of my Father in Heaven. It is with this logic in mind that I answered my son.

Spirit's autism has kept him guarded from these types of tragedies, he has heard the news with little reaction. Maybe it was the fact that a school was involved, maybe it was because he becomes increasingly more aware of this world with each passing day, or maybe its because he isn't as desensitized as those of us that have been indoctrinated in the media environment that exists in today's world, but Spirit was concerned, first for his own safety, and then for the other children.

"I hope a criminal doesn't break into my school."

It's frightening for him, and I have to admit it's frightening for me. So Spirit, I am going to try and explain the unexplainables of this world. You may not understand it right now, and will probably have to settle for a simpler answer from me for the time being, but I believe that one day you will need this, and I think that I am in the right frame of mind to give an answer. (The tragedy in Connecticut fresh on my mind.) So here goes...

Why do things like this happen?

Short answer pal, I haven't a clue. Let me tell you what I do know. We all came to Earth with agency, it was a gift from our Heavenly Father that was so precious to him that he cast out one third of his children that tried to destroy it. Father in Heaven knew that his sons and daughters would use this agency to make good choices and bad choices, so he created a proving ground. We are in that proving ground now. Earth, is the perfect place for us to work out our imperfect judgement, and understand how our choices can have eternal effects on our entire existence. With this proving ground came a way to make up for bad choices, the Atonement, Heavenly Father put in a built in failsafe. The Savior came to Earth to do two things: 1) He came to suffer for the sins of everyone that ever lived on the Earth so that we have the opportunity to make right the things we can't. 2) He came to feel all of the pains of every person that has ever lived on the planet. This means that he can offer comfort to everyone involved in any tragic situation. So you can see that Heavenly Father planned for the dumb things that his children would do.

Why does Heavenly Father let these types of things happen?

Let's talk about what Heavenly Father knows first. He knows all things, the end and the beginning. That can be confusing, so let me put it this way. It is impossible to throw Heavenly Father a surprise party. That means that he knows what's going to happen before it happens. He knows the decisions we will make, BEFORE we make them. Keep in mind we still have to make the decisions, but the outcome is known to Heavenly Father, so that means he can plan for help, plan for lessons to learn, and plan to make sure everything works out.

Above all Spirit know that Heavenly Father loves us! THIS ABOVE ALL.

So say your prayers, know that your Heavenly Father, and your Earthly Father, will work together and our hardest to make this world as easy and beneficial as possible. We love you and will protect you at all costs. Believe it or not He loves you just as much as I do, He may say more, but I think He's okay with the tie. I think He is okay if I speak for both of us. We love you!

Love,

Guts

Boy on the Train

He sits on the train, eyes darting from side to side. Like a prize fighter waiting for the next punch to be thrown. He looks like the train scares him. He focuses on the scenery trying not to let the noise, the shaking, the faces, bother him. He looks at me, very unintentionally mind you, I smile, he looks at the ground, and there it is. I can see autism...can you?

I think "What a brave young man."

He can't be more than seventeen. The others can't see it. They can't see him fighting it off. Focussing to keep himself in check. He rubs his hands together like he's cold. I know better, he's found an ingenious little way to stim without drawing too much attnetion. I smile, and a tear hides behind my eye.

I want to shout at the people: "Can't you see it?! Can't you see how heroic he's being?! This train is like hell on Earth for him and here he sits! No meltdown not even a hint of Echolalia! This kid deserves a standing ovation!"

There they sit, oblivious to his heroism. Well I see it little Jazz fan, and it's amazing. Way to go buddy!

I think about Spirit, he will be this boy someday.

Spirit, in case I haven't told you, you'll always be my hero.

Love,

Guts

We're Learning!

Heart, Spirit, and I went to the lights at Temple Square, but this year things were different. In past years we have gone to the lights (a family tradition since before Spirit's birth) and the night has usually ended with Spirit throwing a fit, in tears, and his mother and I confused, a little frustrated and a lot flabbergasted at what had occurred. Last year didn't end that way, but Spirit's mother and I were still just as befuddled. See my post A Visit To the Museum With the Tasmanian Devil for more details of last year's trip.

As I said this year was different, although my description of the events could be described as identical. Spirit wanted to go to the children's museum atop the Church History Museum. We blew through it in thirty-three seconds, and Heart and I smiled. We took the escalator up, and the elevator down. (A compromise. That's a big deal for you Non-HFA parents out there.) We met Heart's family outside the museum and headed to Temple Square. We decided to go to the lights right after the Thanksgiving Holiday to avoid the inevitable crowds, and to enjoy some unseasonably warm weather. Spirit was on a mission as soon as we passed through the gates, yet there was something different this time. He rushed to the visitor's center making sure to pass by the life size nativity. He noted the beauty of the scene and continued walking. We headed into the Visitor's Center for a quick potty break and then were back at it. A left at the nativity and we were headed toward the Assembly Hall, passing the Tabernacle. A comment about the choir singing and where they sing. Then a left again at the Assembly Hall and off to the plaza for a photo op at the reflecting pool, the podium in front of the grass and temple, and we're done with the lights. Total time approximately seventeen minutes. Heart's family, and Heart, and myself just smile.

Then Guts remembers that there is a Disney Store in the new mall across the street. A quick mention of this and we just bought some more time with a "preferred activity." Once we are at the Disney Store we can focus in on some objects that tickle our fancy. After about eight minutes in the Disney Store we got our first, "I'm hungry, can we go home." Heart lets him know that we are going to go out to eat at one of his preferred eateries. The walk is about five blocks and, of course, we get stopped at every intersection. We make it to the restaurant just in time to get him fed, and it is time to go home... unfortunately we took the train into town, so now we are waiting at a station. This wouldn't be a problem except for the sign. The designers of the train stations we smart men. They decided that it would be easier and more convenient for the riders if they could predict when another train was coming. This prompted the hanging of a digital sign that indicated the approximate time a train would arrive...approximate....time. Autism...meltdown. I don't know if there was a slow pedestrian, a wheelchair that needed to get on the train and took a little more time, or if there was just someone that was extra cautious behind the wheel, but the train was a couple of minutes behind the approximate scheduled arrival time. This was bad enough, but the digital sign that broke the meltdown's back was the popup, you see when a train's time has come, the next trains arrival time pops up. Well my little autistic Spirit freaked out when the train we were waiting for disappeared and the next train's arrival time popped up. KABOOM!

So Heart and I got to ride home with The Dark Lord of the Meltdowns, Emperor Palpatine would be proud Spirit!

Next year no train, I don't want to experience FORCE LIGHTNING, that stuff kicked Luke's trash! 

Lessons From Wreck-it Ralph

Spirit, Heart and I had the opportunity to catch a matinee this weekend, and Spirit chose Wreck-It Ralph. Disney is finally figuring out what Pixar has known all along, that the technology is no good to anyone without a great story. And Wreck-It Ralph is a great story. This isn't a movie review, although the film deserves all the accolades it is receiving. This is about a Dad that saw many identifiable characteristics between himself and the characters on the screen. (Spoiler Alert: If you haven't seen the film I may ruin some stuff for you.) Ralph is a guy that is no longer comfortable in the role to which he has been programmed. He finds himself questioning who he is and what he really wants out of life. This leads him to "game jump." To try and find his place in the world and the rewards he thinks it will bring. He achieves what he thinks is success and ends up crashing into another game where he meets the girl on his shoulder in the picture. Venelope is a sassy little girl that has learned some hard lessons about how people treat others that they feel are different. The other characters in her game have ostracized her for her differences, and excluded her from racing in the nightly tournament that decides the mornings players for the people in the arcade.

Ralph, at first, is more concerned with taking proof to those in his old game of his achievements than he is with helping Venelope. But once he bears witness to the injustices being leveled against her he decides to help. Venelope is a "glitch" something went wrong with her programming and she has a hard time holding herself together when she gets overly excited or emotional. (You're starting to see the parallels now aren't you.) She is ridiculed for her being a "glitch" and has to find respite inside a mountain, where she makes the best with what she has. Without giving anymore of the film away let's say in typical Disney/Pixar fashion Ralph and Venelope combine their efforts to save the day, all while learning that who you are is more about what is on the inside and not how others treat you. Venelope uses her "special abilities" to save the day, and her differences are what help to save everyone in her game.

Now, why would a movie like that leave Heart and I in tears you ask...We are the parents of a "glitch." He has his own special abilities, and his differences are at times invisible, but when he gets overly excited or emotional, those differences become obvious. Yet, if we look carefully, and help him to understand those abilities he may just save us all.

I, on the other hand, identified with Ralph. Once he got to looking around he was left to wonder, "Is this it?" Is this the programmers plan? I've even considered venturing out to prove to the world that I am more than what I have been programmed to be. Yet, like Ralph, I have realized that helping others and adjusting the world I have been given will give me more satisfaction than any other "medal" I could receive anywhere else. My little "glitch"reminds me that, although I may not see the code some days, the programmer has a plan for all of us, and if we stick to it, and make the best of what we have, happiness will surely follow.

Do answers to prayers come at the movies?

For me they did.

Thanks Ralph

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.