I Did Nothing

I didn't do anything today, and I pretty glad about it.

That isn't exactly true. I hung out with Alex, we chased each other around, did a bunch of tickling, and generally behaved like loons. After Alex left with his dad, the other J came down and we went to trivia central and started logging the books with Dale. It's going to take a bit of time to get all of them entered, but I think it will be worth it.

Otherwise I just hung out on the computer, avoiding doing all the things I should have been doing.

I did get some good news today. I haven't got official word on this, but it looks like Alex was accepted by the Katie Beckett program, which will help pay for his therapies. YAY!

So Mad I Could Spit

I'm so incredibly angry, I feel like we've wasted the last year waiting around for one doctor or another to get us results or for forms to be processed or for Alex to be a little older, or for the next damn appointment. They say that the sooner autistic kids get some help the better, and we've been in such a holding pattern for so long now. And Alex has had some help, which I know has improved him, and I'm grateful for that. But I know he could be so much further along.

The reason I'm so incredibly upset right now is that the clinic we take him to is pretty well respected in other areas, so I felt comfortable taking him there for the child development clinic. It is the closest to us, at 45 minutes. It has been one screw up after another. They have given us some good information, but they have not sent us reports, not sent us results, lost forms that we've sent, lost forms that Alex's care givers have sent, have not filled out forms that are needed for other services completely, have changed appointments without informing us, can not figure out that Alex's dad has one address and I have a different address. They send things to me at his address, and things to him at mine. If I ask for something, they'll send it to him. And it usually doesn't matter, because we get along in all things Alex, but when there is a time crunch, them sending it to the wrong address in a different city, isn't helpful. They've changed the head of the clinic once already in the 8 months we've been taking him there, and maybe that was what was needed, but I'm hearing that this is happening to other families too.

We've got another appointment with them next week, and if I'm not satisfied when I leave there, we're going to have to take him to a different clinic. Most likely it will add a couple of hours to our drive, but if it reduces the aggravation it will be worth it. And don't get me wrong, I'm not disputing their results, or Alex's diagnosis, I'm angry that they have made this incredibly stressful time even more stressful.

I could seriously spit.

Too Much to Think About

I've got too much on my mind.

I'm trying to focus it on Alex, because at least something can be done with Alex. I've got job issues, and life issues, and I want to work on health issues. Alex issues might at least yield some results. I think we're going to try an elimination diet. I know that the AMA and CDC haven't accepted any findings from researchers on the effects of diet in relation to autism, but the anecdotal results are compelling. I'm not going blindly into this, grasping at straws. If we can eliminate some of the most common triggers, and see improvement, then we'll have an answer that will be a component of Alex's overall treatment. If we don't see results, then we can try something different. I don't ever want to be one of those parents who just blindly takes the word of the latest guru, pinning all their hopes on one person's ideas. I'm going to do a bit more research before I start eliminating, to make sure I understand how the components work in the diet. I'll probably do a bit of tracking here, as well as notes on paper.

And in "oops" news. So, the toaster has been making this odd smell for awhile. Today, when I got home it was still lingering in the air, so I decided to have done and clean the thing out. A pen. A stinking pen was in the toaster, melted to the wires and wall of the toaster. I had to toss the whole thing out. I'm surprised we didn't have a fire. It most likely fell off of the microwave, where we keep some odds and ends, and into the toaster. I don't know how we didn't notice it right away. Ugh.

Still Blue. And Tired.

So, my boy is terrific. He signed 'more' several times in a row when he was stacking cards (an activity that he does quite often) I was handing them to him one at a time, and asking him if he wanted more each time, as a way to make the solitary game more interactive. After he had stacked the deck a couple of times, I dealt him a card from the bottom of the deck. He looked at it and handed it back, because he knew it wasn't in the order that it was in before. The cards were randomly shuffled before we started. Sometimes I can see so clearly into his head, and other times I can't see anything.

It is so incredibly tiring. I spoke with one of my cousins. He and his wife are going down the same road, and have a lot of information about nutrition and the medical aspects behind autism. We suspect that there have been some other cases in the extended family, but no one is talking. It is frustrating. And scary. And I'm afraid that I won't be able to provide the care that Alex needs. There seems to be help out there, but at the same point it is hard to get to. And there are so many theories and schools of thought on how to best help kids with autism. No one is certain. In fact, sometimes its even hard to get a diagnosis. And then when you do get it, you don't really want it, because it becomes a label.

Alex is. He is perfect, beautiful, loving, smiley, has a great laugh, loves to dance, has specific likes and dislikes, loves to go to school. And he is non-verbal, has sensory issues and sometimes frustrates me beyond words. I love him beyond belief, and as much as I would love to have Alex wake up one morning, talking, singing, and aware, I can't imagine him being different than how he is. So, Alex is.

Not quite as blue. Very tired.

Autism Blues

I've been a bit down this weekend about the autism. Alex is so lovely, and fun, and I know how lucky I am that he is as social and in tune with us as he is, and yet.

I want him to ask me to read to him. I want him to be able to tell me if he's in pain. I want him to tell me what he's thinking about. He is so independent, and sometimes I just think he thinks of anyone around him as a tool to be used. That's hard.

When I was driving around town the other day, I came to the conclusion that it's like being in a tug of war. Some days I can feel myself being more like Alex, we spend time not talking, just communicating non-verbally, I can feel myself being more like he is. Other days I can see him being more in touch, where I think 'normalcy' is just around the corner, and all it will take is the right activity, the right toy, the right book, and he'll be with us for real. I forget sometimes that it isn't Alex on the other side of the tug of war rope. It's the autism I'm pulling against. Alex is the prize.

I read an article that compared autism to computer operating systems, and people with autism as running a Mac OS in a PC world. I want an emulator that I can plug into my baby. One that lets him still be Alex, but able to function in the mainstream. And then I get annoyed with myself. Why do we want everyone to be the same. I tell people all the time that we need to prepare our children for the real world, but I wonder if we're really just making ourselves slaves to some kind of life that we don't particularly want to live.

But that is naive and idealistic too. We all do need to deal with the real world, one way or another. I'm just afraid that sometimes we're ignoring our talents and our children's talents in favor of security or conformity.

I think I've got a bit of a rebellious streak.

First Post

First posts are hard. You wonder what to name things, what to do. I'm writing this for myself, which makes me not want to do an introduction. I don't need to introduce myself to me. But if I were to describe myself, it would be: I'm 33, I have a 3 year old son, who has autism, I'm in the process of being divorced. I work a variety of flexible part time jobs, all of which are kind of fun, and allow me to take off when I need to for my boy. I'm an unmotivated writer. I'm a bit crafty. I adore my friends, and wish I could spend more time with them. I'm in favor of sarcasm. I laugh, loudly, a lot. I've been trying to quit smoking for years. I love to get really angry about things I have no control over and rant. I'm trying to change the world, but it's kind of a slow process.

Describing yourself is like a discovery, and a promise. I'm constantly trying to re-boot my life, to make everything perfect. I realize this can't be done, but I figure that every step I take is one step closer to my ideal.
Lately I've been pretty reflective, which is never a good sign. I'm thinking that big changes are coming (they are already in progress - but it's hard to see it from the inside). You know the ancient chinese curse "May you live in interesting times"? My life is interesting.

That's pretty much it for today.