Shifting tics and drifting minds

This morning, the car needed gas. The poor thing had to be running on fumes as I took my wife to work. Unfortunately, as so often happens, my mind drifted off elsewhere and I drove right on by the gas station. I got all the way to her work and she handed me her bank card.

"What's this for?" I asked.

"To get the gas for the car."

Then it struck me what happened. I know what you're thinking; "Hey man, that happens all the time. It's normal."

Well I have two things to say to that:

1: It doesn't feel normal to me.
2: I could understand this and research shows it's normal to a point.

I hate it when my brain does its drift away thing. It can make it very hard to get where I'm going and finish what I'm doing. It makes me space off important things like current tasks, making dinner, making important phone calls and more.

I've taken the trash out to the can outside and wound up staring at the trash container, wondering why I was there. It may be normal at a certain point, but in my case, I find it terrifying. In any case, my next MRI will be of full spinal and brain so we can try to get a further look at what's going on. So far, concussion causes permanent brain damage cannot be ruled out and is highly likely. Even so, it wouldn't cause me to progressively get worse, so my doctors are concerned on that point.

Finally on me, for a long time there wasn't much of pain involved, but now there is. It's in my calves, knees, elbows, neck and back. The other night, my wife was rubbing the back of my hand gently with her fingers and I was surprised to find that this actually hurt. It felt like my hand was severely bruised, but nothing showed. Now it seems fine. I've experienced the same pain in my scalp on occassion now.

So what about the tics I mention? Well, that brings me to my son who's tics and stims have shifted. They will do that many times as he gets older. All we can do is try to help him work through them and concentrate on what's happening. Some say you can't stop your autistic child from stims or tics, but some have to be addressed. Like forcing a hacking cough that sounds like a cat gagging on a furball. He's developed some new obsessive traits as well that we are trying to help him with.

He's obsessed with the idea that his fingers stink and that he's stepped in something with his shoes. He stepped on a giant slug the other day that kind of sealed the deal for his feelings. Now he does strange tip-toed walks around the back yard that worry us. Maybe I need to step in something gross and handle it like it's no problem just to show him? We really aren't sure. I try to reassure him that something on the bottom of his shoe is why he wears shoes in the first place. I can see it will take consistent application. At times like this I have to remember that he's overcome worse, like being a "poopie picasso". When he was a toddler he would smear feces (it's a texture issue) and nothing tops that, absolutely nothing.

So we carry on and that's all for the update, for now.

Overcome: Never give up

I find myself having to keep this cane of mine closer to me lately. Apparently, my sense of balance and the nerves in my knees conspire to throw me on the ground more often now. I'm trying some new medication for the trembling to steady my hands and help me get more sleep at night, but we still don't  know what this progressing condition is that I have in my collection of "conditions".

I especially want to keep my hands as useful as possible for as long as possible for sake of my current mission. As many of you know know (who follow along), I am growing the project of my fantasy universe, Galaxy Zento as a symbol of many things.

It is a symbol of overcoming, of "doing" in spite of conditions, of functioning with these medical conditions. It is about functioning in spite of Autism, Traumatic Brain Injury, and whatever the other thing is (next MRI will of full spine).  It's about abolishing the stygma and myths that come with all of them as well.

So far, I have written two novels on my project with one under agency consideration as we speak. I have drawn, circulated and donated an anti bullying poster to my son's elementary school. I have drawn and circulated an autism awareness poster with another of my heroes as well. I won honorable mention from Writer's Journal for a short story of one of my characters. I have drawn, inked, and computer colored over 200 illustrations. I've put together about 100 custom miniatures of my characters too. I'm still writing and working on showcases for the GZ blog. And I'm still not stopping.

I'm doing this to show my son what you can accomplish, despite what may or may not be "wrong" with you. My son, like me, has autism. I'm doing this to show anyone who has doubts about themselves for the exact same reasons, just what you can accomplish.

Yes, I walk with a cane (a four pod cane no doubt), yes I am disabled, yes I have to take daily naps because I run out of energy fast...... but I'm still ticking.  I'm still going and I don't intend to stop.

Galaxy Zento, is an example and I always want it to shine that way, no matter where it ultimately lands. The fact is, what matters is, that I never give up.

You can do what you want to do or find something new. And I'm not talking about getting a job when you are disabled. I'm talking about, your personal worth. You are worth something. You must never give up.

My personal view of the word CURE

Sometimes it just doesn't pay to say anything, especially on the internet. I recently got into a discussion that derailed over the use of the word "cure". Here were some of the points of view:

-A couple of people felt that people should stop using the word altogether in light of autism. They find it offensive and compare it to vulgar racial slang.

-There were the viewpoints of how looking for a cure is offensive.

My point of view on this word is this: There is no cure for autism. Because there is no cure for autism I often use paranthesis around the word lik this, "cure". Because there is no cure for autism there is nothing to realistically define the word "cure" as it pertains to autism.

I do not think all people with autism need a cure.

I do think getting personally offended because someone else wants a cure (what ever that may be) is a waste of energy.

My opinion on stopping people from saying cure in regard to autism is that it won't work. It's an unrealistic approach and there are better ways to educate people. It also won't work because, like autism itself, you are crossing a variety of personaly points of view on the word. Unfortunately, I couldn't get my real point of view past the instantaneous offense taken on the other side.

You aren't going to get people to stop saying cure because it doesn't have the same meaning to everyone. It's not being used in the same context by everyone. It's not like racial slurs where the context is clear and obvious. 

Now just about any term can be used in a derogatory manner and I don't like that either. If someone were to use the word cure on me in that manner I wouldn't feel friendly towards them either. I agree that treating people with autism or any other condition in a derogatory manner is wrong.

You see, I prefer to dislike the derogatory behavior more than any word. The behavior is the root of the issue. Truly derogatory or bigoted people can find more words to use.

That brings me to my next point. If you want people to stop being derogatory to you, then you need to show the same courtesy you expect of them. If you are honestly going across the internet page in question with remarks like:

"those brainwashed NTs"
"that pervasive JC stuff" (religious remark)

Well, then you'll only be seen as a hypocrite and you'll get the same respect you give.  And attacking people as a general group (NTs)... how can you do that and then demand they accept you?

When someone attacks you, do you feel like accepting them? Of course not! You want distance from that person and plenty of it.

But, this is a discussion I have had enough of. I refuse to try and be polite and helpful to people who will turn around and go to war with me. I'm not your enemy. I am not pro-cure and I am not anti-cure. I know that there is no cure and fear is our greatest enemy. I know that how you treat someone is how you will be treated in return. Your behavior speaks volumes. The "cure" debate is now on my "banned" list because it's just too volatile and stressful to deal with on either side, and that's a big red flag people should pay attention to.

I end this with a link to my best blog on the "cure" debate I could have ever written and then that is that. LINK

Hallucination or Imagination?

My son has a powerful sense of imagination. It's clear to me that it's very vivid to him and has created concern. Not only can he drift off in his imagination at any unexpected moment, but it can be very hard to reel him in. It takes him off task and delays in getting things done. Drifting off into your own world is fairly common for children with autism (who were once considered Asperger's). But what if this is something more than imagination? What are the risks of hallucinations. What do you watch for?

Having a powerful imagination can be unsettling. Just ask Stephen King, who once stated in an interview that he uses a nightlight or leaves his closet light on. Maybe he said that to sell on how scary his stories can be, but then again, who remembers being scared of the dark as a child? A vivid imagination can take some understanding.

According to the article in this LINK, there is a significant difference you can watch for. Better yet, let me quote it:

"True hallucinations, unlike normal childhood imaginary play, are often frightening to the child and cause great distress. They come on suddenly without warning and often linger around for a while before suddenly disappearing. Whether the hallucinations are short or last for a longer duration, the fear and panic they cause the child is very real."

Hallucinations are not part of the description of the autism scale and its comorbidities. But that doesn't make them impossible.  While schizoprenia is extremely rare in children, there are other things that can lend to hallucination. You can see them in the same article but here:

-Lack of sleep
-Reactions to medication
-Illnesses like cancer or with various internal organs
-concussion or other head injury
-severe psychological trauma

Imagination is powerful, there's no doubt about that, but most of it is normal under given circumstances. If your child is excited about Christmas or Easter, for example, he or she may swear up and down that they saw Santa Claus or the Easter Bunny. This is fine and changes as they catch up in maturity.

Speaking of maturity, it's also important to remember that our autism kids (Asperger's) are often delayed in maturity so this may happen in years that are considered inappropriate. Support to your child and reminders of reality versus imagination are usually sufficient in coping with this process. Under most circumstances, such as seeing Santa Claus, you can disregard. You don't want to put undue pressure on your child to mature at a pace they aren't capable of.

Reflecting on World Autism Day

Whenever I see a comment that says "Autism is everyday, not just once a year" in reference to Autism Day, I have to pause for a moment. Some say that just to add to awareness, but some are genuinely insulted that there is a day on the calendar named for our cause. And that's not just the cause of people like me who are lucky enough to be verbal, or parents working with their children, but everyone who lives with autism, everyone.

Having a day on the calendar given to us in this manner is not to suggest that people should only pay attention to autism once a year. It is a grand step towards educating and awareness and we should all be proud of it and thankful for it. Every step that goes towards awareness is a good one and having a day is no small achievement. And lets also not forget that April is also Autism Awarenes Month!

Let me put it another way with an example. Take Veteran's day. Veterans should be thanked whenever you come across them, not just once a year. But there's a lot more to veterans day than that, isn't there? It's a day set to commemorate them and honor them.

Yes, to those of us who live with autism, it's every day. To those who don't, we need to not expect people to wake up and pay homage to autism every day. There's only so much you can expect out of people who don't live with it. There's a fine line between education (awareness) and shoving something down someone's throat. Don't shove it down their throats, the results always turn out bad.

Now, look how far Autism Day has come. It's gone from being celebrated with blurbs in the newspaper to being heralded on all media sources. I saw an advertisement that said "make it blue" and liked that. It's for awareness and everyone sees it. It won't be long before you go buy a calendar and find it marked on that day. That's a great achievement towards awareness.

So I say "thank you" for autism day! Thank you for a day that brings awareness to so many people across the globe. Thank you for a day I don't have to break my own back to give out that awareness. Thank you for a day that may mean less stigma and more understanding for a growing issue. Thank you for showing me how much you are trying to understand.

The day is an honor, not an insult. It's recognition, not ignorance. Should efforts continue to provide awareness and education year round? Of course! No one is saying it shouldn't.

1 in 88 versus the DSM for Autism

There's a whole new line of fear-mongering being launched right now across the internet about how the new DSM will supposedly change how autism is reported. This will supposed change the new number of 1 in 88 children back towards 1 in 110 or even further off of that.

First of all, you have to ask yourself one question: Based on what proven statistic?

You see the idea of 1 in 88 is not NEW news by any means. It's been under study as a possible change in statistics for three years (give or take). So here we go again, freaking out over old news. Just because they've decided to place confirmation on it doesn't mean the world is going to change. All these people had autism and tomorrow they still will, but I get ahead of myself here.

As I posted in my last blog about the DSM (and the one before that), the changes in diagnosis that people are freaking out about, were implemented LAST YEAR. So Asperger's was already dissolved into being called simply.... autism. So, again, nothing new. And by the way, that didn't change my diagnosis or my son's diagnosis. Want to know why?

Because it's up to your doctor! Moreso it's up to you and your doctor as a team. Doctors don't go through all their patients and change diagnosis just because the DSM says so. Can you imagine the kind of man hours that would take? Doctors don't have time to quibble over terminology just because a panel of experts say so.

There is no law that says your child has to be rediagnosed. If your doctor has been supportive of your child's needs so far, that is highly unlikely to change. And ask your doctor, yes a profound thought, ASK YOUR DOCTOR if you are worried. Don't read some bilge on the internet and go into hysterics, it does nothing for you.

Doctors don't like being told how to diagnose their patients. Read that over and over again until you'll never forget it.  Since the last fear wave went through I mentioned it to real live doctors myself. One of which rolled his eyes and shook his head. He knows his patients IN PERSON. The people writing the DSM don't.

The comments that will fly by your pages will have little in the way of educational merit and be nothing more than blind fear. I've seen comments on "accurate reporting" and "losing diagnosis" and as I dug into them, I found that there was no supporting evidence to any of them.

So, the final advice that will clinch it all is to talk to your doctor! The internet is a fine place for advice, but none of these people know you or your family personally who may be giving this advice.

Past that, I'm not surprised they were able to confirm the 1 in 88, I'm sure that number will increase as time goes on.

Internet support groups

It seems like you can't sneeze at your search engine without finding a support group on the net. You can find them for anything and at any capacity. Some are small like chat rooms and some social pages. Others are huge with website information, message boards, articles and more. Some internet support is done by a person writing blog articles, like this one. There are all sorts of variations, but what do you need to know in looking for a place to be accepted?

Isn't that what it's really about? We all want a place to be accepted and there are plenty of people who can't seem to find that place in their local avenues. Thanks to a lack of services in small towns or even some cities, the internet has become the go to place for support groups. The good about this is that these groups are easy to find. The bad is that they lack "in person" social experiences.

The most important thing to remember about any social group you join for support of any condition is this:  Everyone else has the condition too. If you join a group for autism, you have to remember that they people you are talking to also have autism and have the same pitfalls in behavior or social skills that you might have. The same thing goes for bipolar disorder. What's worse, words on a screen lack emotion and are subject to being easily misunderstood from what the writer intends. Everyone has extra sensitivity to something and stepping on toes or egos is so easy it's ridiculous. This results in flame and post wars that get people banned or completely destroy the validity of a support group.

Our conditions make us all unreasonable in one way or another and we need to remember that as we enter the support group setting. This is why live support groups usually have a mentor, therapist or doctor on hand to help moderate discussions and help with misunderstandings.

There are a lot of community groups that lack moderation. Places with no moderation risk becoming mosh pits of hostile behavior that do little for support of anyone. Some people like it, but few of them feel the need for acceptance. Rather, they just want a place to go for their bad behavior.

No one is immune to the power of misunderstanding on the internet. Even good moderators can forget that the person they are talking to has a social disorder. That, in itself, is the great pitfall of having a social disorder in the first place.

TIP: When a comment upsets you, STOP and ask yourself: Is this person really trying to offend me or is this a misunderstanding? Remember, you are in the same boat and this person likely thinks differently than you do.

TIP: If you can't get along with someone or feel they are truly attacking you, just block them. Sometimes there is just no way to help that person, no matter what you do and some people really are just there to hurt others.

TIP: Don't stay in hostile territory. When it's clear that the behavior of the group isn't going to be helpful to you, leave. Shop around, there are lots of groups out there and some are bound to be well moderated and much more friendly.

Being in a support group on the net can be a rewarding experience. Just try to remember how your disorder/condition affects you. However it affects you others will be affected similarly, better, or worse. We all have triggers and we all have the potential to "go off". Some people will have quicker triggers than others. By this rule of thumb, you can get along better with others and make your social internet experience that much better.