Friday, May 8, 2009

Living Against the Clock

I often imagine that there is a little timer in the right side of my forehead. This timer lets me know how much I can do in a single day. Light activities don't do too much to it, but are still limited. Heavier activities push the clock faster and cause me to need rest quicker. To look at me, you might never know this except that I am explaining it today. Physically, most of my body is pretty sound. I'm a bit out of shape and overweight, but I have lost some recently and working slowly on more. I can actually lift a hundred pounds of weight. If I do, however, there will be consequences. I may faint dead away or at least get really dizzy and have to put the weight down quickly.

Why do I have such a problem? In that spot on my forehead is a cluster of severely damaged nerves. Behind that is a likely some form of brain damage that doens't show up on MRI's or Scans, but it's there alright. It's actually fairly common for several forms of brain damage not to show up on conventional scanning tests. The nerves cause actual pain and the damage with the nerves brings on dizziness and danger of fainting if I over exert myself. On top of that, I have sleep apnea and that shortens the timer even more on random days. I am working on dealing with that, but first...

Why do I have such damage? This is actually one of the most embarrassing things I deal with in my life but I am going to talk about it, because I'm not the only person who has had to deal with it. Under high stress, many autistics are at risk of a type of seizure that gets caused by sensory overload along with too much external stress (including anger). This kind of seizure causes violent outbursts of self damage. Common actions are head butting against walls and floors, self punching, flailing wildly, throwing all objects within reach, lashing out with arms and legs, etc. Some patients have them so sporadically they have to wear a helmet for the rest of their lives. You may have rarely seen one of these people. Yes, I am saying that I suffer from this condition of autism.

So what happens to me? First, it's not for the weak of stomach and it's absolutely horrifying to all who witness as well as myself. I dont actually get to remember much of the outburst if it happens, but once it happens I am powerless against it. I will ball up my fists and relentlessly slam them against my head until I drop from sheer exhaustion or pass out from the hitting. I will completely lose all awareness of the world around me. Fortunately I am restrainable at the wrists, but the storm going on in my mind is still absolutely devastating. I will get flashing images and flashbacks from abuse long in the past and the rage will be so very intense that I will turn beet red. As it passes I may or may not remain concsious for very long. I will require bedrest and that may be for the rest of the day.

Because I've had these episodes since I was around 6 years old (now 38), there's practically no way that there isn't permanent damage. I feel it, and I know it's there. There's also permanent damage in my wrists, such as carpal tunnel. In the beginning I would have these episodes as much as three times a week. My parents ignored them because they thought I was just a brat. Other episodes I actually was able to hide, because I felt them coming on. I would go and hide in my closet or somewhere no one could see me until it was over. I was so scared and knew that no one would help me. Of course that's not true today.

I haven't had an episode for nearly a year because I now know how to stop them. I do this with early intervention techniques. When I'm getting overloaded or overstressed, I remove myself from the situation and go to my "safe spot". I turn up a fan to full blast and lie down in my bed with a large overstuffed pillow. I squeeze that pillow for all it's worth. I will still have some pain and flashing, but no violence. Then I will pass out for an hour or so. I wake up revitalized and ready to take on the world again.

So, because of the permanent damage, I live on a low battery every day. The harder I push myself, the faster that timer or battery goes down. If I push myself hard enough, all at once, I will collapse. So I have to pace myself every single day, even though I don't look disabled in this way at a glance. I can tell you that I have been judged more than once on the subject. It makes me very nervous to explain it. But I have come to a point where I see the need for the education because other kids are coming up in the autism spectrum with this condition.

It's important to communicate with your child and watch for this condition in order to save them from serious damage in the future. Brain damage is easier to get than most realize.

Things I have to avoid: over exertion, too much stress, and heat.Signs that I will have to rest soon: walking with my cane and jerking body movements such as my head, arms or legs.

I'm also on medication to control my conditions and own them, so they don't own me. And that is why I live against the clock, every day. I write this information with the hopes that others out there know that they are not alone and to demonstrate that I am a good person and a safe person, with a little help from friends and family and a strong living protocol.

As always, I am open for requests and questions. If you know of something in abuse, autism, or disorders that you would like to know about, let me know. I'll research and do my best to put up an informative blog on the subject.

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