Friday, July 15, 2011

Birthday Flowers...

(I think you have to click on the title of this posting in order to read the entire thing...)

Fiasco. Chaos. Are you kidding me?? Par for the course. That figures. I’m not surprised. Not again. Really!?! How on earth…

Those are all things I’ve said or thought today. And we didn’t leave the house until 10:30 a.m., and the above statements occurred before 12:15 or so. Yes, what a day it’s been already. And I’m not surprised…it is par for the course, and it does seem chaotic. But it’s a very typical day so far, really.

Today is the day before Tyler turns 13. He actually hugged me this morning and said, "Good morning, Mom." But then no sooner had I begun to enjoy that moment, he was off in another room in search of electronics. He was going to play with something electronic at all costs. I didn’t matter which parent he would upset, which sibling he would bowl over to get them. It didn’t matter what it would cost in time or money to fix or reset whatever it was he messed with after he destructively, but unknowingly reprogrammed into an inoperable state. He needed his technology fix.

And when I say that he "needed" it…I mean that in a very literal sense. Had he not gotten his hands on something electronic, I can only imagine how he would suffer all day.
We got through breakfast and dressing…which both are a daily challenge. He wants the opposite of what he is offered for breakfast. Even if given choices, he wants something else…usually something he knows fully well we do not have in the house, or he wants something unreasonable. Sorry, marshmallows are NOT acceptable breakfasts around here. Or he insists on wearing jeans and a sweatshirt when it’s going to be over 90 degrees with probably 100% or more (if that’s possible) humidity for the day.

It just never ends…so to say that each day "begins" that way, is inaccurate, because we are really just continuing on from the night before when we checked on him 12 or more times between 9:30 and midnight to finally believe he was asleep, then to only find him at 3 a.m. stealing a light bulb from the storage room so that he can turn his lamp on and read.
Please don’t think I am exaggerating. I am not…not in the slightest. Am I complaining? Not really…more just getting it off my chest. Venting a little maybe, but not complaining. Especially now as I sit here listening to the squeaks and sometimes even pleasant sounds of him playing his dad’s old trumpet.

He’s gotten fairly good…at least good sounding. I have no idea if he’s keying the same notes he sees on the page…especially since he’s using baritone music, since that’s the instrument he plays in the school band…but he at least sounds like he’s playing something. And his determination…wow. We actually started this whole thing off by discouraging him from trying to teach himself how to play the trumpet. We didn’t want him to develop bad or incorrect habits. But to stop him would take a force that we simply do not have. And at least when he’s playing we can hear him throughout the house and do not have to worry that all of our pictures, tax information, business records, etc., on the computer are being translated into some computer code we’ll never be able to recover it from, or being deleted all together. It’s actually a bit of respite for us sometimes. And he enjoys it, so in a way, we all win.

So then our day went on…fed and clothed, I actually got him to brush his teeth without debate, but probably only because I ignored the dirt still on his legs from the gardening activity from the day before. No shower to disagree about, so brushing the teeth came easily today. Life’s little blessings. We were heading back to do more gardening anyway.

His job with gardening is to hook up the hose and get it pulled down to the garden. The garden we are working on is at church, so this involves getting the water key, unlocking the faucet box, using the key to turn the water on, etc. It’s a funky little key, more similar to a socket than a key, so it fits with Tyler’s interests (obsessions). I got started pulling more weeds and digging. It took me two trips inside the church to find him and get him back outside and on track. It took much more nagging than that to get him to take the pulled weeds to the dumpster. But it did only take once of him getting busted sitting in the car messing with my cell phone to stop that.

It was hot. Hotter than I’d expected it to be. So we wrapped it up earlier than planned and began gathering our things. "Tyler, give me the keys so I can start the car and get it cooled off a bit." So he runs to get them and comes back empty handed. Ummmm…where are the keys???
So after many minutes of searching the car, the church office and bathroom, a couple texts to our pastor to see if he remembered seeing them in his office before he left, we finally found them. Two feet away from the garden in the grass.

Par for the course. Typical. Just another day in paradise??? Sure…if I am able to see it that way on that day. It’s not always easy. Even as Tyler’s parent, it’s so difficult to see how these chaotic moments are blessings. The stress I felt bothering the church secretary, keeping her late on a Friday, texting my pastor knowing he was probably at or on his way to a home visit, stressing about finding those keys in time to pick Cassidy up from dance camp…it’s probably typical and par for the course for Tyler. It’s probably what he feels like at 3 a.m. when he’s searching the basement for a light bulb that will go unnoticed—at least for a while—if it goes missing. I don’t know for sure, and never will, but I can imagine that the brain scramble I felt searching for those keys is a very mild version of how Tyler feels when he’s searching for something electronic to satiate his appetite for technology. I’d be willing to bet that it’s how he feels more often than not. That breaks my heart.

So when I say that he’s going to be the death of me…I feel so guilty. I feel terrible that I’ve said such a thing, even though it’s really what I felt at the time. And it is "just a phrase, right?" Well, that makes it even worse…the way he understands me saying such things…so literally, he probably sees himself causing my death in his mind. Shame on me.

This Sunday we are having church in the park. It’s also the week we purchased flowers for the service in honor of Tyler’s 13th birthday. So to make sure they are still alive and arrive at the park Sunday, while at church today, we picked up the flowers and will tend to them at home over the weekend and take them with us Sunday.

The flowers are beautiful…in their bright and colorful way. I got a text from the church secretary telling me they were very pretty, more colorful than usual. It may have been her way of reminding me to come get them, but it got me excited to see them.

They are beautiful. They are colorful. There are some crazy colored flowers in there. There are also some very pretty, traditional flowers in the arrangement. On the way home I worried the tall, skinny one in the center would break. It stood so tall above all the others, but it wiggled and wobbled with the bouncing and shaking of the car. Tyler held them, and I told him to be careful. But he had no control over the bumps in the road.

He never has had control over the bumps in the road. And he’s not been in control of the turns we’ve taken, the roads we’ve had to travel down, or the detours we’ve had to take. But he’s always been along for the ride, doing his best, enduring the bumps and jarring moments. Braving the sometimes rough terrain and unknown paths, and taking notice when we take a detour. Noticing what’s different, but trusting that we’ll make it to the end.

I kept watching the flowers as we drove. Sure enough, just as my instincts had told me, the biggest, tallest flower broke. It just couldn’t withstand the rough environment of the three mile trip—well, three and a half with the detour. It reminded me of Tyler. The whole bouquet did, actually, but that single flower did especially.

Physically, it was tall and skinny. Beautiful. White and pure looking. It stood above the rest and seemed to be the first thing you noticed when you looked at the whole bunch. It was just like Tyler in so many ways. Then I thought it was also like him in that it was broken. It was different. It was something that others might pull out and discard because it wasn’t perfect. But I knew that I could help it remain standing tall. It just needed a little support. It needed help. It could be just as beautiful as any other flower, if it had what it needed. It certainly couldn’t do it alone…but it could still do it.

I got the flowers home and looked at them some more. I first added some water to them. I propped up the main flower with some of the others. Then I studied the whole bouquet.

Crazy daisies, I call them. Daisies dyed bright orange, hot pink, neon green…They reminded me so much of Tyler. He’s wild and crazy. Bright and cheery. Beautiful.

And there were some traditional flowers in there. Subtle and complimentary of the others. Some were carnations. They provided a good balance to the craziness of the daisies. They didn’t match, yet they didn’t clash either. They just blended together into a mixture of normal and crazy. They were just like Tyler.

And then as I stared at them and studied them, I noticed that there were sections. Compartmentalized sections of crazy daisies. A little of this and a little of that. Pink ones bundled together. Orange all grouped together in the center. And green ones tucked away together on the right. Just like Tyler. He is a little of this and a little of that. Some crazy things here and there. Everything compartmentalized and kept together, but put in the same vase to create something bright and beautiful.

And then back to that tall, shining star in the center of them all. It was broken, but still able to shine and provide a center to everything with the right support. It was exciting in a way…to sit and look at these flowers and really make a connection with them. Unusual, maybe. But exciting.

I kept looking for something that wasn’t like Tyler in those flowers. I couldn’t find it. Maybe because I was so convinced that these flowers represented Tyler so perfectly, that I wouldn’t allow myself to see it. Maybe because there just simply isn’t anything that’s not like him.
I got tears in my eyes. Big alligator tears. I didn’t pay attention that Tyler was only feet away, wrapped up in his own made-up game of cards, yet watching every move I made. Today he noticed my emotions. He usually doesn’t. Just as it’s a rare occasion he starts the day with a hug and a good morning. But today he noticed. And he asked me why I was crying.
I couldn’t get into how the flowers reminded me of him. I’d have to go places that 1) I couldn’t go with him; i.e. the broken flower and 2) he wouldn’t understand. It was almost beyond my own comprehension. And even if he were capable of "getting it" I wasn’t confident I could communicate it in a way that anyone would understand anyway.

So I just looked at him and said, "I am just so proud of you and love you so much, Tyler." He responded with a rote and dry, "I know" and went on about his game. I watched him play. There was a system. There were rules to the game he played. It’s a game he made up and I couldn’t figure out the rules or the system if I’d tried…but he knew what they were. He was hyper-focused on those cards, and any interruption to his game would likely result in an eruption in him. So I just studied him as I had just studied the flowers.

I saw all the same things. Chaos. Controlled chaos, but chaos nonetheless. Beauty. Not necessarily beauty to be seen by everyone, but it was a shining beauty that couldn’t be denied. Brightness. Compartmentalized brightness, balanced with traditional, basic elements. Broken-ness. Broken-ness that forced choices between hanging in there and providing the necessary support—that may or may not even work—or discarding for the sake of perceived perfection. Craziness. Upsetting and confusing, yet cohesive and encompassing. Craziness that creates a unique and irresistible appeal.

Wow…talk about a jumbled brain day…and so goes my heart, my life, my love.

Happy 13th birthday, Tyler! You are my sunshine!

Thursday, March 3, 2011

Good news...Bad news

We have good news and we have bad news.  It really doesn't matter which news you want first, because the good news is the bad news.  How can bad news be good news?  Well, I updated my Facebook status yesterday, after we received our news, to state that sometimes devastating news can actually be the best news ever, especially when you really already knew it and the news you get is just a confirmation of what you already knew.  So, what I am saying is, we found out something pretty devastating yesterday.  But it was good to find out, and we are actually happy with the news, because now what we thought we knew has been confirmed, verified, and professionally determined.  The feelings we have had and the frustrations we have been dealing with are finally validated and we are not crazy, making things up, or exaggerating a situation.  We are not over-reacting and we are not bad parents.  We are relieved.  And while we call this news "devastating," it is not news that has devastated us.

So, the news is...that Tyler has been diagnosed as being on the autism spectrum.  Somewhere between Aspberger's Syndrome and Pervasive Developmental Disorder--Not Otherwise Specified (PDD-NOS).  Why is this good news?  Well, because we now have a name for something we have been challenged with for years.  We can move forward and speak, act, and advocate with a specific purpose and identity.  We've always had a good and right purpose--for Tyler to live happily.  But without that name, that diagnosis, it's been extra challenging to do all of those things.  Without that name to call this "thing" we've been dealing with, our battles and obstacles became more about helping people to understand and "get it" and less about taking steps to help Tyler.  It doesn't have to be as much about making people understand or "get it" now, because we can call it what it is and then move on to dealing with it.  We don't have to defend ourselves against people telling us we are bad parents, that we are enabling a lazy child, that we are letting him get away with things, etc.  We can move forward and start advocating for Tyler instead of defending our choices, actions, and requests.  And when people rudely ask, "What is WRONG with him?" we can politely reply, "Nothing is wrong with him, but he does have autism."

Why has it taken this long to get this information?  This diagnosis?  Honestly, that's not the issue.  It doesn't matter.  It could be that nobody was really certain.  It could be that there wasn't a need for the diagnosis.  Maybe we were already dealing with it in an appropriate manner.  Handling the behaviors and the other challenges in a way that was best for Tyler.  Maybe it didn't need a name.  But we finally got to a crossroads where WE needed it to have a name.  Our battles and challenges were overwhelming us and our advocacy was becoming less and less effective.  We needed to be able to tell people, "Hey, he has ______ and that is the reason he act this way, says that, can't do this, etc.!"  Please DO NOT mistake that statement as us saying, "Hey, Tyler has autism and so he has an excuse for not doing the things he should or doing things he shouldn't."  Autism, Aspberger's, PDD-NOS will never be an excuse for anything.  It will often be an explanation.  It may sometimes be an obstacle.  It will even sometimes be a comfort.  But it will never be an excuse.  It doesn't need to be.  It is a blessing. 

And it will never be all of what or who Tyler was, is, or will become.  It is not fair to define anyone by any single thing about them.  It is not fair to define Tyler by this diagnosis.  Because of this diagnosis, he has not changed.  He still loves the same.  He still hurts the same.  He still has fun the same.  He still struggles the same.  Tyler is NOT autistic.  Tyler has autism.  He is not dumber, less able, or to be felt sorry for.  He is still Tyler.  He still has strengths and weaknesses.  He still has wonderful and special characteristics and he still has some bad habits and less desirable characteristics.  Tyler will continue to accomplish, grow, develop, and live.  Tyler will also continue to be met with challenges, struggles, and hard lessons learned.  What can change, is the understanding of Tyler.  We will learn to accept and understand his limitations and how to accommodate them.  We will learn when and how to increase and decrease our expectations of Tyler based upon his needs and the support he has.  We will learn how to educate others about his needs and circumstances and we will help him grow up being confident, strong, and grounded.  We will help him come to understand himself and his diagnosis.  We don't want anything more for Tyler than any other parent wants for their children and we don't expect anything less for Tyler than any other parent expects for their children.  Our hopes and dreams for Tyler are the same as other parents' hopes and dreams are for their children.  It's very basic and simple.  We want, expect, and hope and dream for Tyler to grow up to be happy and productive.  We want, expect, and hope and dream for Tyler to be a good person who will touch the lives of others in a positive and healthy way.

The same Tyler he was yesterday before this label was placed upon him.  We've said it as often as many other parents have, that we don't want Tyler to be "labeled."  But that's not entirely true.  Having autism, or being labeled with that, helps us in many ways help Tyler.  So labeling him in that way is beneficial.  What we don't want to happen, is for the label of having autism to DEFINE him.  I feel I'm being redundant...so let me finish with this and move on.  Autism is one ingredient of Tyler.  Just as sugar is one ingredient in sugar cookies.  Alone, it is just sugar.  With eggs, flour, and other ingredients in just the right amounts, mixed, stirred, and carefully baked...they become cookies.  Autism alone is just autism.  But mixed in with Tyler's smile, his caring ways, his outbursts, his quirks, and all the other ingredients in just the right amounts, mixed, stirred, and carefully nurtured and loved, they become Tyler.  He is his own perfect, unique, delicious recipe, and autism is part of that perfection.

Tyler has autism.  He is not autistic.  There is nothing wrong with him.  There is nothing we will do to "cure" or "fix" him.  We will make choices and decisions to make his life the best it can be, just as any parent would.  We will need your help from time to time.  We may not always ask for it.  We will not always do everything right, but we will always do our best.  We will make mistakes.  We may be protective.  We may get defensive.  We will not always want to talk about this.  We may want to only talk about this at times.  We may shut down.  We may not be able to shut up. 

If you want to know more, we will be happy to answer your questions to the best of our ability.  We will continue to talk with you about it, update you, and keep you informed.  We do not know all the answers, and we probably never will.  We are still learning about this.  We have a lot to learn and a lot to accomplish.  Tyler has been the center of our universe since he was born and he will continue to be.  But our lives will not be consumed with autism.  It has just now become a mere part of our lives, not what our lives are all about.

We will continue to post about this.  As we learn more, you will too.  If you want to learn more on your own, please visit AutismSpeaks.org.  Our journey has only just begun, although we have been on the road for a long time now.  We ask for your prayers for Tyler and for our family as we welcome this different chapter into our lives.  Do not pity us. Do not feel sorry for us.  Do not be glad you are not us.  We are blessed, truly, truly blessed.


Until next time...

Tuesday, January 25, 2011

Let's Get Started...

This is surely strange for me. I am generally a very private person so starting a blog is a bit out of character for me. But while I'm private,there is so much I want to share with the world. Seems to be quite a contradiction, so maybe I can accomplish both by posting a blog but staying anonymous.  Some people will know who I am, but those are the people who I'd share these things with anyway.

The title...well, there really may not be any glory in my stories, but that's me being humble and modest.  What I really believe is that there is glory in everyone's story.  Choosing a title for my blog was very time comsuming. I had a lot of ideas. I searched a lot of quotes.  I tried to think of songs that mean a lot to me.  Most of them were taken.  I liked this one.  It was catchy and seems easy to remember.  And while I don't think my story is any more glorious or extraordinary from anyone else's...I liked it.

So today I was inspired to start a blog because I wanted to share a story my daughter wrote.  I've wanted to start a blog for a while, but I don't want everyone to know everything about me.  Did I pretty much already say that...

Okay, so here's her story.  In her own words, with her own spellings.  I giggled when I read the first line! Hope you will, too!

Wuns a pot of time
(Once upon a time)
there lived a tinety
(there lived a tiny)
cretcher and he
(creature and he)
rily luved chees
(really loved cheese)
and it whas a muws
(and it was a mouse)
and like I sed
(and like I said)
are retty the muws
(all ready the mouse)
loved chees but he
(loved cheese but he)
loves chetrchees now
(loves cheddar cheese now)
my brother loves
(my brother loves)
chees and my brother
(cheese and my brother)
loves chetrchees ollsowe.
(loves cheddar cheese also.)

So, this is my first blog.  No glory, really...but now I've started.  Maybe there is the glory...something new begun.