to be or not to be 15

I had my fifteenth birthday last month, and some people thought it was weird that I wanted to have a party at Chuck E Cheese. But they have great arcade games there. Actually there were more adults at my party than kids, and a lot of them went nuts on the games. I get along better with adults than kids my age anyway.

Kids my age a lot of times do stupid things like waste time trying to bug girls and show off. I always think about having a serious relationship, finding someone who likes the same things I like, and eventually leading to marriage way down the road. But I'm in no hurry to get there, I'd like to take things slowly. I have no interest in drinking, or taking drugs. I tried alcohol once; piss would have been better. I've seen a lot of reality tv shows where people do drugs and then act really really dumb, and then pass out like a corpse. What's the point of that? I know some people take drugs because they hate their lives, but they should spend some time in a foreign country and see if they don't think their lives are a lot better than they thought.

The point about age with Asperger's is that a lot of kids who have it are only two thirds the maturity of their chronological age. So therefore I'm more like ten? But I don't FEEL like ten to me. But my mom says I am. I guess because people my age are getting jobs, or learning to drive, or are more independent. I don't really know how different I am from other kids, because how I am seems normal to me.

When I'm in public, I think I'm actually very mature, or more mature than other people my age. I don't spaz out in public, and I don't swear. But a lot of times I don't notice how other people are feeling, and I don't respond to them. When something bugs me, I try to ignore it until it drives me nuts and then I explode.

blogging at gunpoint

I was home schooled until fifth grade when I started a cyber charter. I got sick all the time when I was little, so my mom decided to take me out of regular school. Plus she had started to suspect that I would have a hard time in regular school, what with having to sit at a desk and all, and follow rules, and try to learn things by intuition. So when I was 12, she had me tested at the cyber school and they said I should be in seventh grade instead. They decided on sixth. I didn't care, I had no idea what it meant to be in a certain grade. It was hard, since I still couldn't write. I don't just mean I didn't know how to compose, I mean I had a hard time taking a pen and physically making the letters. I am left handed, but so what. I really don't know why, I would draw constantly all day long. I still have a hard time writing, but I can really use a keyboard.

I liked the cyber school when I could do it, but I hated it when I couldn't do it. Some stuff was easy and some stuff was hard. It was really different from home schooling. IF I had the choice to go back to home schooling, I would. But now I have to think about what I need for college; for some reason though I have no desire to go to a regular school with a regular classroom, I have always believed that I should go to college.

After a few months at the cyber school, there was a health class resource called Brainpop that I used all the time, even just for fun. I was reading about symptoms of a thing called autism, and I thought, wow that sounds like me. And that sounds like me. And that sounds like me. Me me me. In fact, I thought, why don't they have my picture in there? So I asked my mom if she had ever heard of autism, and she started laughing. That's how I found out I was autistic. I guess she didn't think there was any reason to tell me, kind of like when you find out that Santa Claus doesn't really exist.

I think it might have been nice if I had known sooner, just so I could understand why I was weird. But I will leave those details for another post. I don't really like blogging. I don't even like myspace, or email, even though I am a teenager. But I'm supposed to do this as therapy, because I avoid communicating with people. Bah humbug. But I love the internet. I like youtube the most. I will make my own videos someday, and then maybe I can stop blog writing. That's all for today.

I don't know what I'm doing, but I have something to say.

I have this overwhelming need recently to find an outlet of expression, but technology has passed me by. Or maybe I can just look at it as learning a new thing. Whatever. Way to turn over a new leaf with my insecurity on my sleeve.

Usually my motivation to express myself doesn't conquer my fear of the internet, but tonight I am jumping on the blogging band wagon. I have been stalking the blogs of other people for some time now, but I really really like my privacy. And even after some diligent efforts to find a blog program that allows people of your choice to view your blogs with just a password, I have not succeeded in discovering the perfect program for me. So I'm going public. Because I refuse to make my family and friends sign up for one more account at some obscure site that thinks it's the latest and greatest thing, and that everyone is just dying to give it their personal email account information.

I don't even know half their email accounts anyway; I got lazy about collecting those after the beauty of myspace allowed me to email people without knowing their addresses. The technology makes me uneasy, but I fully admit to being dependent on it. So maybe I should have titled myself "the reluctant blogger." I am definitely skittish. And grouchy because I can't have my own way.

But there are definite advantages to blogging. In my case, I have a lot of people that I care about that are far away. Many of them care a lot about our kids, and are especially interested in their development since they are not neuro typical. This is a great way to share the all the details, in absence of a large group conference call on a daily basis. And I can do this whenever it suits me, namely late at night or in the wee hours of the morning when the house is quiet and everyone is asleep.

I should be grateful to live during a time that includes such fabulous communication options. I just feel like a technology dinosaur, and I'm nervous about what I don't know. I will probably delete any anonymous comments, that is, IF I've enabled them, I don't know. My hypocrisy knows no limits; I leave anonymous comments on blogs all the time.

So with a complete lack of confidence, I do now proceed. Why do I have such a desire to reach out more? I don't really know. Fifteen years ago, I gave birth to a fervently desired baby boy, and I feel like I've been stumbling around in the dark ever since. A multitude of challenges for us and for him. A year ago, we got the most precise diagnosis yet: Asperger's syndrome. I still hadn't gotten used to the autism label. Every time I think I've got a handle on it, the goal changes.

Asperger's syndrome; maybe knowing that would help me figure out how to better proceed. And then I had a mini-stroke (I didn't even know there was such a thing). Diagnosis for me? Diabetes, at a high degree. All my fears came rushing back that had plagued me at his birth: would I live long enough to make sure his needs were met? To make sure he would grow into a fully functioning independent adult? To maximize his potential? If I do die, will his godparents be up to the task?

Well it's a year later, and I'm still here, thank god for that. And still trying to figure out how best to proceed. Some how, his entering the high school years has made all the decisions we have to make from now on seem more critical to an exponential degree.

Six years ago, we were blessed with another baby, and I thought it was a chance to get it right, in some ways redeem ourselves by applying the lessons learned from baby number one. Baby number two was a package deal with a teenage daughter borrowed from a cousin as a "mother's helper." She was full of lessons for us too as we navigated the path of discovery for her own special needs. I feel like I have a full time job as a mental health advocate, but I'm losing my mind.

You'd think I'd have the hang of this by now, but truly, I feel completely inadequate to the task. As my baby turned six, it became all too obvious that he is not only delayed, but it looks like he'll be going down the same path as his big brother. I know there is a genetic link to autism, but there was such an obvious reaction to vaccines and/or mercury in the case of my big boy, that it never occurred to me that the little one might be affected too by a similar condition.

The baby has never been vaccinated, though lord knows what's in his dental materials (at least it's not mercury). I feel like I have failed them both. I know I can't control the outcome of the combination of my genes with my husband's, but I can be just as irrational as anybody else. In fact, we had planned to never again dip into our gene pool after baby number one, just in case, but sometimes god laughs at the plans we mere mortals make.

I wouldn't undo it if I could. Those two precious children that were created as a result of our love for each other are most definitely the joy of our lives and god's greatest blessing. But it overwhelms me to think that every decision I make on their behalf in raising them is ultra-crucial. The journey has been rough, and looks like it's only getting more difficult. Books, prayer and crying on shoulders have become my greatest refuge.

In the midst of my whining, I have to make a point of what I've been telling everyone lately: we have actually won the autism lottery, if there is such a thing. Other parents we've met, who have autistic children, envy us and would for sure tell me to shut up. My older son, and my younger son as well, if he does indeed have the same label, are definitely on the high functioning end of the spectrum.

So how do I best exploit that? How do I make certain that they get the full benefit of every service they're entitled to and that every appropriate educational tool is applied? I know they have gifts to contribute to the world, how do I make sure they can best access their talents? My guilt that I might do the wrong thing, that I might not have done the right thing, well I think that is a fairly universal fear among all parents. But for exceptional children, I can easily imagine that it is probably doubled or tripled.

A few years ago, as my oldest son approached middle school age, I agonized over the switch from exclusively home schooling to either a hybrid of home school and private school, or a fairly new option in education: cyber school. I knew I needed more support. I finally settled on the latter, and it has been both really great and really difficult. The poor kid has been putting in sixty hour weeks to keep up, doesn't have any formal accommodations, but he mostly gets A's. It's almost three years later, and I still don't know if I did the right thing.

One very interesting day came during his first year of enrollment; he was studying diseases in his health class. "Mom, have you ever heard of autism?" I had been wondering when the right time would come to have a discussion about that. Looked like it had arrived. "Yes, I've heard of autism, and you have it." It had never really occurred to him before that he was different, and I felt no need to point it out to him.

Up until recently, inclusion had never been too difficult for him. People occasionally told me that they thought he was "Interesting," including one of the pastors from our church. But nobody except some of our closest inner circle really knew, and even most of them remained blissfully ignorant. I say that because there are definitely those who would prefer not to acknowledge anything but perfection.

As puberty advances though, there is really no denying that quirks exist. I have a child who is taller than me, most certainly a fifteen year old physically, even will NEED to shave soon, and yet he is really like a ten year old in terms of social development and emotional maturity. He can no longer avoid the knowledge that other kids his age are different, even though that's who he hangs out with, and it hurts him. That hurts me, too.

We had another one of those conversations not too long ago. "T, have you ever heard the word 'Asperger'?" He thought really hard for a moment. "Is that like the guy on youtube who reviews video games? He said a game he played was like an ass burger with a side of fries." I told him I was pretty sure they weren't related, as soon as I was done swallowing my laughter. I picked out a book from the library for us to read together, a fictional account of a fifteen year old with Asperger's who tries to solve a neighborhood murder mystery (the victim is a dog). My son loved it, I was disappointed. But it was a start.

We are both testing out the edges of what Asperger's means to us, and what we need to do about it. Right now, my biggest challenge is getting him to relate what he is doing presently with his education to the career goals he has for ten years from now. More than five minutes into the future is difficult for him to visualize. We have to pick an educational resource for this fall, and it's proving to be a really weighty consideration.

Somehow all of this is creating a need in me to document our journey. Hopefully I'll be getting him to make some contributions of his own. I know the grandparents would love that, even if it's just "today I ate a peanut butter sandwich, and then I studied my Spanish before I played video games."

We take all the signs of progress we can get.