Friday, October 2, 2015

MS Fatigue will make you PAY

This morning I'm using my cane around the house. I never use my cane around the house. Why? Because I live in a tiny house with one narrow hallway. I can usually balance myself  on walls and counters. Those aren't enough today. It's because MS fatigue is making me pay.

I had a good day yesterday. I walked my son to and from school. The extra walk for school, I was sure would hit me, but I did more than that. I also walked to find the owners of two lost dogs that wound up in my back yard. I even managed to find them! While I felt fine with all the walking and some housework, MS was keeping its own tally of my actions.

The alarm rang across the room this morning. I felt it right away. A feeling like my forehead was full of lead. I had to struggle to sit up, leaning on my bedside table. The alarm still demanded my attention. I gazed through the darkness toward the sound and wondered if I could develop telekinesis. Nope. Dear wife slept right through it and I envied her that. But then, she hasn't been feeling well lately. I had to use the bed for support as I shifted to the end and used the window sill to support me in standing. Next I had to manage two steps to the dresser without throwing myself on the floor. My knees rebelled the moment I went to stand, so this was like jumping a ravine.

Deep breath and shove off. And I made it. My knees wanted to buckle but I held on to the top of the dresser. I reached out and fumbled with the alarm clock. Finally silence. I stayed there for a couple of minutes, catching my breath from a small journey across a room that healthy people totally take for granted. Now I just had to make it 15 feet to the bed room door with nothing to support me. Oh, there's a set of plastic shelves, but I would just pull those over. If you could have seen me, you would have thought I shambled like a zombie from the Walking Dead. Still, I made it and leaned on the door or wall to take a micro-break before heading out to wake my son for school.

Mornings are always tough and off balance, but after a day of actual physical activity, it's always worse. MS, makes you pay for it. Sometimes for days. I'm glad it's Friday and everyone can sleep in tomorrow! Even then, when I get up, it's slow and easy or crash. My wife had to take kiddo to school as I can barely walk even with my coffee in me. But then, life doesn't stop for MS. My kitchen is a disaster area and I'm wearing my last pair of clean underwear. I will have to manage at least a couple of things today.

That's what Multiple Sclerosis does to you. It gives you a day of doing things really well, and then relapses you into uselessness for anywhere up to several days. You don't just get tired for the night, your body malfunctions for a lot longer in response to physical fatigue. That's what it's like. Try to imagine if you can. As food for thought, I leave you with a little ditty by Jethro Tull:

My first and last time with you
and we had some fun.
wenT walking through the trees, yeah!
And then I kissed you once.
Oh I want to see you soon
but I wonder how.
It was a new day yesterday
but it's an old day now.
Spent a long time looking
for a game to play.
My luck should be so bad now
to turn out this way.
Oh I had to leave today
just when I thought I'd found you.
It was a new day yesterday
But it's an old day now.

Wednesday, September 23, 2015

And yet we are blessed

This is a really tough blog to write. I'm going to explain something I haven't yet because of several reasons. As I explain this, though, I want you to understand how blessed we are because of the assistance we have had and the people who are working with my son now. Yes, we are blessed in spite of the situation.

I used to be able to order and give out free stuff in my Galaxy Zento biz. I can't now. I've told people that we are bent over a barrel and there have been some medical issues with myself and my dear wife, but I haven't explained this part of the story. Why? Because I'm not looking to bitch or sob. But I have contained this long enough that I really can't just stay shut down over it any more. I need to talk. There are names I still cannot say, so forgive that and just bear with me.

As many of you know I have a super 13 year old son with autism. He's a great kid and we are so proud of him every day. He's gone through so much. Right now he's in a "private school" that specializes in his educational needs. The reason our family has no money for any extras (and barely enough for some essentials) is that we are paying 298 dollars a month to put him through school.

It could be worse, but a wonderful, wonderful company fronted half the years tuition. So why don't we have him in public school? This is the hard part. The part where I can't name names. But it's like this; about two years ago, my son had to spend a few months in a hospital for the heavy stress related injuries caused by the school system. Without going into a ton of details, it's as simple as that.

I've been asked why I can't afford to buy copies of my own game or pay for pro artists etc, well that's why. And frankly, my son is just a little more important than how they think I should try to start my business. But that's just a side frustration. I digress.

Sue them? No. Believe it or not, that would actually hurt quite a few people. I spoke to a very good attorney who won a case for another family against the same system over 5 years ago. That system owes said family over a hundred grand and has yet to pay a single penny. Not only that, but the system will retaliate and drag my son's current school under a microscope to "see if he's getting proper education there". That would hurt every student there that this wonderful school has helped. So, the way we are doing this is the best way we possibly can.

We live by circulating credit cards, not having cable, and keeping it at the bare essentials. And it's totally worth it. My son has been helped so very much, that I love that place. I would rather be house poor than see them hurt him. Because they told me, to my face, that middle school here would not follow his IEP and they had no fear in telling me that because there is just no damned enforcement here. And my family is not the only special needs family they have done this with. They scare families away so they don't have to deal with them.

So, for you IEP warriors out there. PLEASE don't ask who they are. I won't tell you. If you find out, please don't contact them, you will hurt us and countless other families. I just needed to talk it out. I know many of you will understand.

What saddens me is how much some people don't understand (like the elitists of Kickstarter and board games who ran me off). Finding out only that I'm disabled was enough for them to say I was full of excuses and to go away. God only knows what they'd say about my son. Again, side frustration. Sorry.

But we never give up. I fight to show my son that it's always worth it to keep going. I'm so proud of his accomplishments and overcoming. And before anyone asks. We never told him to blame his school system even though he's fearful of certain people if he sees them in public. He sees his time at the hospital as something he needed to help aim in the right direction and learn important life skills. He does not consider himself a victim, rather a growing boy with his own difficulties. Now we just have to figure out what we are doing about High School once we have him caught up, because if we can't move, he will be back in that system again. Not sure what we'll do about that.

Wednesday, August 19, 2015

Autism and Back to School

Across the nation we are officially back to school. Maybe a few aren't, but most are. Going back to school means change in schedule and likely a few meltdowns and tantrums. I'm writing this today to touch base on a few reminders that may help you through the transition.

Remember what you learned last year and the year before that. If you've done this more than 3 or 4 times, you should be prepared for resistance. That won't make it any more fun to deal with, but better prepared thinking than not. Consider techniques you used last year and use them again this year.

Don't engage the tantrum: This is especially true with autistics. We can be a very argumentative bunch. Kids already have this angry debating skill. Do your best to stay cool and not react to the tantrum. State your expectations and then drop it. Apply consequences after you get what you want out of the situation and when everyone has calmed down.

Don't apply consequences before going to school if it only further triggers your child into a fit. I have direct experience with this. The idea is getting your child to school, hopefully in a mood that won't destroy their school day. Leave discussing their behavior and any consequences for when they get home. "Remember how you used all those swear words this morning? No video games tonight." This way, you got them to school and gave consequences at a time where you have more time and control.

Remember to reward the behaviors you want. If your kid is handling transition better than last year, tell him! Be happy with what he does right and praise it. Give rewards. A good reward system is always important, even if it isn't worth a hundred bucks. You don't have to spend lavish funds to give rewards. The simple things can be very effective.

Give down time after school. Don't expect your child to go straight to homework the second they walk through the door. He or she has spent the last 8 hours struggling to behave and jump through school hoops. A break after school is welcome and kind. Set up a routine. Offer half an hour of break time to do what ever they want (save anything they can't do because of behavior) with the knowledge that it's homework time after that. My son actually prefers to get right to it, but he always has the option of that after school break.

Hopefully, these tips help you handle the new transition that we all have to wade through. Age doesn't seem to help, so we must be vigilant parents. Have tips you'd like to share? Post them in comments!

Do you or your kids love heroes? Add the Galaxy Zento page! Books and games for ages 8 and up are available. The work of GZ is dedicated to showing our autistic youth that you CAN DO even with a few struggles. Life get's better so never give up. The GZ page is loaded with cool artwork and updates!

Wednesday, August 5, 2015

Minimum wage, living wage, and everyone else

First I want to point out an article I saw today that I totally agree with.


Now, go read it! Then come back and check this out.

Before MS ravaged me I was making over 16 dollars an hour as a dog cop. Animal Control, the dog catcher if you must call it that. Before you scoff, you should know that I worked tons of overtime on emergencies like a child being mauled, illegal and dangerous exotic animals, someone's lost pup hit by a car, or a family of raccoons invading a family domicile.

If the risks of those aren't enough for you, try being depended on by every other emergency support agency for any issue where an animal shows up. Warrant served on a guy with attack dogs? We had to be there. House on fire with pets? We had to be there. Armed standoff and there are pets? We had to be there. Murder scene? Yep. Suicide? Yep. Drug bust? Yep. Been on them all and more. And our officers didn't even wear bullet proof vests until the last half of my job stay. That's 6 and a half years with about 3 years open chested and being threatened every other day. Yes. We were threatened over people and their stupid animal issues.

So, do I think I deserved to be paid more than someone flipping burgers for a living? Let me explain something to you.

Fast food is the single largest job market of our economy. Biggest one, bar none. The days of it being a 'breakthrough' to the job market are gone. So let's get with the freaking times, shall we?

Here's the truth. We are all underpaid. Now back up and read that last sentence again. Keep doing that until it sinks in. I mean all of us. Every single one who isn't some corporate fat cat looking down from his pile of money laughing his ass off at all of us. Everyone who isn't a politician with three mansions and a fleet of yachts paid for with our tax dollars.

No one, from soldier or firemen to broom pushers, are being paid enough to support a family on a single income. And depending on where you live and the demographics involved you are only slightly better or worse off. Need I remind you of the practically non-existent middle class? Where did they go? And you want to bitch about what a fast food worker makes. They aren't the ones who screwed everything up. Leave them alone.

What we need to do is take a page from their playbook and put up a fight for ourselves. Stop corporations from sending all their jobs overseas. Enforce fair and competitive pay rates. And especially, especially, stop the corporate assholes from responding by jacking prices through the roof so things stay just as bad as they've ever been.

I can't believe we are up in arms over a guy wrapping a sandwich when our politicians and corporate slimeballs are the ones hoarding all the money. They are the ones who have made it so that we can't afford what even they are selling. Then, for every family they force into the poor house (with loss of homes and cars and jobs) they sneer and tell that family to get a job. You know, all those people who lost their houses because of rip off scams allowed by our own government? Do you know how many of those people have found justice and got their homes back? Maybe 1%, but I'm leaning toward NO ONE. But let's get mad at the employees over at Burger King and McDonalds while we still buy their food. Yeah, that make sense.

Isn't it amazing how the oil companies cry all year and then report that they made 65 billion dollars in new record profits? They make record profits every single year. Every single year. Get it? I wonder. Do the grunt employees get record raises every single year? I bet not. I bet Betty the paper pusher hasn't seen a raise in 10 years easy.

If you think you're having fun now, get this; you have a 50%-60% of becoming disabled before retirement age. You pay for disability insurance throughout your employed life. You know what you'll get for SSD without dependants? I get 1100 bucks a month. Divide that by 80 and you get the equivalent of 13.75 an hour. And that's money I paid for. Service I worked for and earned. It's not welfare. So go ahead and tell me I should be paid less than a burger flipper. Don't say it isn't the same thing because what you'll be missing out on is that earning a living is just that; earning a living.

It's time to see that we are all in the same leaky, crappy boat. Now what are YOU going to do about it?

Saturday, June 27, 2015

The Bible and being Gay

This is where the friction is. Now that the Supreme Court has ruled in favor of gay marriage, there is an uprising of angry people who find being gay an abomination before God. Well, it's high time people learned something new. I'm going to set this issue on its ear. I may lose Facebook friends over this, but if it's that easy for you to walk, you likely won't be missed. Yes, this is going to be that serious and straight forward. The problem the way I see it is that people who are angry about this don't know a single thing about what it's like to be gay or why people are gay. So let us start with that.

Being gay is not a choice. It is a proven physiological orientation that cannot be helped any more than what color your eyes are or how tall you will grow to be. That is a fact. It's been proven by scientific studies over the recent decades. While I'm not gay, I was worn with a difference in wiring too. I was born with Asperger's Syndrome. Neither situation is product of a disease. Neither situation is a product of choice. So why are we holding people accountable before God for something they could not hope to choose or control? Better yet, who are any of you to be judging anyone as faulty before the eyes of God? Last I learned, that was his power alone.

Now for a history lesson. In the time the Bible was being compiled (around what, a thousand years ago?) times and beliefs were different and moreso savage. There are many practices of the Bible, still in the book that we do not practice today. Look at them and ask yourself why we don't practice them:

If a woman harms a mans "unit" she is to have her hand cut off without mercy; Deuteronomy 25:11-2

If a man's "unit" is damaged he shall not enter the kingdom of Heaven: Deuteronomy 23-1 (Too bad so sad for all those industrial accidents and cancer victims)

Women are not allowed to have any positions of authority over men. Timothy 2:11 (Look back at your history to see the same failed arguments of today for comparison. When women were given the right to vote for example)

If a woman is not a virgin when she marries she is to be stoned to death. Deuteronomy 22: 20-11

If you curse at your parents you must be killed.  Leviticus 20:9

So tell me. Why don't we follow these select portions of the bible? They did back those barbaric times and it IS the word of the Bible.  I'll tell you why. Because we know better. Because he have discovered these practices to be wrong. We have discovered that there is actually a difference in the Bible between the prehistoric beliefs of man versus the teachings of God or Jesus Christ. We don't even teach those passages in Sunday School. You never hear them preached from the pulpit in a conventional church. We've learned that a woman has the same rights as a man. So too, do all people as we hold all human beings equal (or we're supposed to).

This is where someone is likely to throw the bestiality argument or comparison in. But it's a faulty argument because we are talking about the rights of human beings on all sides. Not man to animal but human to human.

It's time to lift ourselves past this and learn like we did when it came to women's rights that this is no different. It's human rights. And we have to stop holding people accountable for how nature made them. For how they are beyond their own choice. If you really believe the good words of the Bible, you'll realize this to be true.

Now let's accept people for who and what they are and move on. There are problems in our world that have demanded our attention with far more importance than gay marriage. Homeless vets, child starvation, crime, and joblessness come to mind. Get a grip people. Get with the times. We're supposed to know better by now.

In response to a question below before anyone else asks: You can google these with ridiculous ease, but here's one to start on:   STUDY LINK.

Thursday, June 11, 2015

The tale of the Texas pool party

Just before I went in for dental surgery I shared the following video to my Facebook page. At the cursory look (that I'm just as guilty of getting sucked into as anyone) I looks like Officer David Casebolt had seen too many action movies. But, like everything, there is more to the story and it begs your attention and mine. If the video below is gone, you can google it. It went more than viral enough.


This has sparked cop hatred on all levels. It's sparked demonstrations that filled the private neighborhood with over a thousand people for picketing. All anyone seems to care about is what races were present and the video gives you that slant instantly. But they all ignore some very simple basic facts of reality:

1: If you run from the police, they will chase you. FACT.
2: If you refuse to follow basic instructions in an already super tense situation, you will get taken down. FACT.

Please feel free to do your own deep research on these and I don't mean go read all the memes people make. Find the real facts.

The first thing that initially got me in the video was the whole Hollywood tuck and roll thing. But watch the vid a few times and you see staggering in his steps. He may have tripped. And with the stress he was already under, I can understand.

Second, I didn't care for the cursing and swearing out of the kids, but again, now I get where it came from. Doesn't make it right, but he is only human and I challenge any of you to go through his full day and come out grinning.

Finally, he pulled his gun at one point. When I was blinded to the facts by the infectious mob mentality that hits us all, I was astounded. I still don't think he needed to draw the weapon, but I also note that he was outnumbered at least 10 to one (by people rushing him when he had given clear instructions to LEAVE multiple times) before the other officers could move in to back him up. Once the rushers were cleared back, he put his weapon away.

His day: Here is a LINK to the article.  Now to explain directly. The two prior calls before the pool scene were as follows:

Suicide by shotgun in front of children. Do I really have to spell that out for you?

Attempted suicide by a minor girl on a rooftop. So after seeing a man with his face blown all over the room, he had to talk a young girl into living.

Now go to a scene where you're trying to sort out a massive crowd of people who aren't listening, won't follow basic directions, and even rush AT YOU while you're trying to do your job. Explain to me how you would be just peaches and cream and cool as a cucumber in the whole ordeal. Please try. I really want to see that.

It is NOT a matter of race. It is a matter of basic human stress levels. But it doesn't stop there.

Casebolt's family is under constant death threats. He resigned. The family of the bikini clad girl are running a Go Fund Me for a bruise and scrape they want to sue for. David Casebolt doesn't deserve what he's getting. He resigned, leave him the hell alone.

People, I agree that there are bad cops out there. I worry though, that people pulling out the video cameras on every single thing they see involving police is doing more harm than good. It's making us ignore what these officers live with daily. It's making us forget that they risk their lives every day and have to see the worst sides of humanity every day. Any of you who think you can do a better job, are welcome to sign up, I'm sure. We should really know better by now, but no.

So, how would you like to work a job where your every move is being dissected by someone with a video phone? How would you handle that pressure on top of everything else you have to do in one day? Have people just itching for the right time to make your whole life go viral?  And while you're doing that, you still have to get the guy with gun in his mouth to try and live again. You still better protect and serve or die trying. Because you know, you're a public servant and all.

Saturday, June 6, 2015

Knowing yourself: warning of sensory overload

Stock photos
As promised, I'm going to dig into more of how a sensory/stress overload actually feels and how I work to stay ahead of them.

I mentioned in my last post that there is a prickly sensation in the back of my neck that is one warning. Another, if I'm paying attention to myself, is that I become less of a generally pleasant person to be around. I may experience feelings of anger that have no apparent trigger. I don't like feeling this way, so I've learned to recognize it most times. If I'm sick, I may need help seeing it. But then, who is pleasant when they're sick?

Trigger factors:

Stress: If a lot of things are a stressing me out, I have to be more mindful.

Heat: Thanks to my MS, heat is a threat. I can't be out in direct high  heat for a very long time. It wears me down fast and leads to other triggers.

Exhaustion: The more tired I am the more at risk I am. It's important to pace myself. But I am a stubborn man at times. It's not easy losing your independence to MS or any other condition.


Snappy disposition: If I'm getting cranky it's a sign.

Dizziness: Vertigo is not my friend. It's a sign that I'm overloaded.

Tilting vision: My view actually tilts on a weird slant to the right and happens with bursts of dizziness.

Extra tremors: The more I'm having, the more careful I need to be, but I have tremors for multiple reasons, so I have to watch for tremors that come with the rest of the issues here.

Rapid breathing: Also comes with an accelerated pulse rate that I can actually feel in my neck.

Loss of coordination: Unable to grasp things properly, dropping things, and extra stumbling beyond what I normally have with MS.

How it feels. I get hot. Really hot. Hot to the touch even. I lose cognitive function and get confused. Nothing I see, feel or hear seems right or makes sense. Fight or flight is being triggered with no physical threat apparent. My only hope is to get somewhere dark and cool.

I use a fan for two purposes. One is temperature and the other is to dull my other senses, like my crazy hearing. White noise from a fan is very helpful. I use the same to sleep at night.

People who suffer from sensory overload have a tough job/responsibility in controlling it before it controls them. In its full grip, it's a blind rage like no other where nothing makes any cognitive sense any more. Everything is closing in on you. Everything; every color, every sound, every sensation on your skin, every light, EVERYTHING.

It takes years to decades to come close to controlling it completely. Some are luckier with it than others, of course. Many never completely control it.

What seems to be a problem out in the public still today, is that this is a real medical condition. It really affects people. Once in a while, I get the chance to educate someone. We can only hope to keep educating and getting the news out that these situations are real.

If you are suffering from sensory disorders, it falls to you to have a home protocol where you can escape and destress.

If your child has a sensory disorder, it falls to you to teach your child how to develop the same home protocols. Fortunately, there are tons of tip sites and assistance growing on the internet every day. I posted links to a couple of sites on my last entry.

Remember, you are not alone. It's real. And there are more of us out there, than most people realize.