Even I can stumble in autism parenting

My kiddo when he was doing homework

Raising a child with autism is a series of challenges. Parents get flustered and we are no exception. Yes, I've been an advocate for education on autism but that doesn't make me more than human or immune to stress and frustration.

It's easier to give advice on someone else's child because you can almost do it with a clearer head and a different point of view. But that's why we have a community isn't it? So let me bring up to date.

Last week my son was grounded from his DS games for three days because of lying. He accepted that up front but got up in the middle of the night and stole his DS back from our bedroom. For that, he lost it until the 1st of July (with a vacation right around the corner). I warned him if he did that again, he couldn't take his DS on vacation. We spent the day talking about it and doing what is right. That very night, he stole it again.

I hid the DS in a new place that truly confounded him. We woke up at 2 am with him in our closet looking for it.

To stop that behavior we removed the DS from the house, but a new situation came up. It was 10:30 or so at night and we were in the opposite end of the house watching television when I got a phone call. It was the stepfather of one of my son's friends (not keep in mind my son's 10 years old). My son was standing in his friend's driveway on the opposite side of the block from us. I couldn't believe it. I went straight to his room and sure enough, he wasn't there. He had climbed out his bedroom window and left. We didn't hear a thing and no one saw anything either. I went and picked him up.

How did he manage a window with a six foot drop? His bed was how he reached the window and pushed out the screen. My mountain bike was parked under the outside of the window and that's how he got down. He was lucky, way too lucky to describe. The following morning we went into protocol mode. Call the therapists office and report to his psych dr, get his counselor and a police officer to come over and talk to him about how dangerous it was for a child in his pajamas to run off at night.

He hasn't run off again, but he's still getting up at night and getting into mischief. He snuck his laptop into his room and has gotten candy. The candy is no big deal but we are worried for his safety so there are rounds of us playing guard duty. His bedroom has been completely rearranged so there's no more reaching that window. I need to be taking his shoes and sandals at night. And I've set up a table in the living room so I can be right in sight of him while working at my computer instead of being in the office.

We've already received lots of wonderful advice. Good friend Neil from facebook suggested that his DS may have become his special interest and therefore as powerful as a stim behavior for him. Taking it away makes him too unbalanced. I missed that thought and thank Neil for pointing it out. So a new schedule is under way. He's saying he needs more of us. He's not throwing violent tantrums or anything like that.

But even an advocate can get flustered and need advice. No one is perfect.

To all my Autism Friends and Family

Just because you have autism or a debilitating disorder, doesn't mean you can't leave your mark on this world.

I plan to be a living example of what I just wrote above this line and I'm asking for your support in doing so. NOT monetary support, so just put that out of your mind. I'm asking for moral support in another fashion that won't cost you a thing. I'm asking for a show of numbers. Let me explain.

As some of you know, I have moved on to another project called Galaxy Zento. It is my universe of heroes, villains, fantasy and sci fi and has it's own blog (linked to the name). This universe is how I survived some of my childhood.  I want you to remember that this is the work of a man with increasing health difficulties, disability (autism, brain injury and possibly MS or related). On top of that I want you to remember that this is a man not giving up. So let my example be your example. I want to share that with you.

You are the best of readers and I have enjoyed your support in my autism writings since I started in around 2008. The works of this blog will remain online until the internet ceases to exist (or blogspot does and I hope that never happens). We have shared so much in the world of autism. We've laughed and cried and my work has actually helped a few people here and there. I do hope it helped way more than that. So here is how you can help me with my project.

1: If you have been a "follower" of this blog, please do so on the Galaxy Zento blog too. Even if you never go back to it, it shows support. I really hope you do come back and enjoy the stories I'm writing there, but just the fact that followers show is wonderful and I will be grateful to you for that.

2: Share it! If you like what you read or know someone who likes to read online, share my work where ever you want to! So long as there is a link and I'm posted as the owner, you can even print and share (not sell).  Share anywhere you like and go, Facebook, Twitter, Reddit, Stumbleupon, whatever!

3: Comment! I would very much enjoy to see comments from anyone. You can post anonymously or sign in and your email will not be spammed (I've checked on that with Blogspot). I will not use your email for anything at all. I would just love to get the interaction. The items above are more important, but this would be very cool to see.

4: If you are on Facebook, come to the Galaxy Zento fan page and click LIKE. That will also NOT spam you and shows your support. Feel free to browse the more than 200 illustrations I have drawn so far (and more to come before I lose any more use of my hands). I hope you will visit there often too. The more "likes" the better. Naturally, as above, comments and all sorts of picture likes are very welcome!  And again, share the same way if you would. On the fanpage there will be updates to all sorts of things Galaxy Zento, that includes the book work and more art.

Now, if you want to, and you see something of my art that you really really like or want to show off Galaxy Zento in other ways, that's where you could make purchases if you want to. I do NOT expect you to. But it is available and I have done Autism art as well. The autism art and T-shirts are available on my CafePress page. Kids sizes are there too. If you want a mug or mouse pad compare prices with my DeviantArt page before you buy. I don't get much out of any sales. I get 2 bucks if you buy a mousepad at DeviantArt for example. But you could get something to show off and enjoy.

Sorry, no T-shirts on DeviantArt.  I will take Autism art requests and make them available!

 My stance will always be for autism education. Want to know who I think you should donate to on autism?   Easter Seals and your local Autism Society chapter, that's who.  If you are in another country and have a group that's helping your community (that's legally recognized and legitimate for taking donations) go with them.

So, what I'm asking to recap is for follows and likes on the blog and facebook and sharing. Commets and interaction would also be nice. So there you have it. I will be passing this around to my friends of autism on facebook and email and I hope you will consider it. Let my example be yours. And know that no one with autism is alone. You are not alone. Thanks and I hope you enjoy what you see!

Autism in the workplace

I'm going to use the term Asperger's for high functioning autism here because it's recognizable and familiar. I could say HFA too, but whatever. This is for those who are able to go out and seek employment. You know who you are.

This post is inspired by a comment a while back:

"I've got Asperger's syndrome and so will probably be re-diagnosed as now having mild autism. Since resources are limited, those with a supposedly less severe disability such as myself will likely lose what little support we are getting.

I've read many blogs on the subject and no-one seems to be discussing the fact that the needs of people across the autistic are so very different. Many people with Asperger's, myself included, are capable of living fully independent lives but need a lot of intensive and expensive support...especially in the area of employment"

First of all, we would do well to remember that our needs across all of us vary dramatically from one end of the spectrum to the other. That's why it's referred to as a spectrum. It's hard for us to do that sometimes because of our social blindness that trips us up so much. That same "social blindness" (as I call it- not a medical term) can really screw things up on the job.

Seeking employment with our conditions is a daunting task. Sometimes, as you try to explain yourself, (especially if you do it in an interview) you can almost see the interviewer rolling their eyes:

"Oh gawd, seriously?"

And you know you aren't getting that job. It's a nerve wracking experience to say the least.

So what do you do? Hide the fact that you have any condition? Sure, but then if things mess up somewhere and you try to explain it, you wind up with them either not believing you or penalizing you harder. I've had this happen personally. I've lost jobs because I thought I was following directions and they came around and said, "How could you do that!"  Employment is not such an easy world for those who have autism at any level. No, that doesn't speak for everyone. Some never have a problem, or at least don't look like it. Others with more difficulty wind up with unforgiving employers who have no patience.

And that's what we need, patience and often direct and literal instruction on the job. In todays financially stressed world, there aren't as many patient employers as there should be. So there are some things that we need to do the best we can.

1: Never give up looking for ways to be employed or self supporting.
2: Get career minded and seek schooling for what interests you most.
3: Seek out special programs in your area or state that may help you get training or work experience.

I know, not all of us can do this, and many will need help and guidance. That's why the rest of us advocates need to educate employers and bring this to the attention of our politicians and special programs. Employing someone with autism may take some adjustment and clear communication skills but there are rewards for doing so.

1: Detail oriented. We can be so detial oriented that, once we know our job, we don't vary. And we'll work hard to prove it.
2: Loyalty to company. Once we get into a company and work for them, we can be fiercely loyal to who we work for. We'll be ready to go to bat. We'll help with special projects (so long as we have clear instructions).
3: While not all of us can be awesome with the public (we'll sure try!) many of us can be awesome in behind the scenes project support that will knock your customer's socks off.

Now some final advice for you seeking employment. Something you need to ask yourself:

Are you responsible with your medical conditions? If not, that can and will get in the way of your employment opportunities.  For example, if you have bipolar disorder (severe enough to require medication) and you don't take your medication, you could have problems. It's one thing to be doing the best you can with what you have. It's another entirely to be irresponsible, commit crimes, drink, do drugs, or not take care of yourself. So, if you want to succeed here are a few things to remember:

1: Hygiene... go to work clean! Take showers, brush your teeth and hair, clean yourself and wear clean clothes. Use deodorant! Use soap! Do it everyday if you have bodily odor problems. As you get older you will find your body needs it more and more. Mine sure does!

2: Stay out of legal trouble! Don't get into illegal drugs, don't abuse any drugs, don't drink alcohol. Stay away from people who do these things.

3: Don't be lazy. Get out of bed in the morning, be on time or even five to ten minutes early. Keep to your schedule.

It is hard out there. We do need support. What's sad is that there are areas where we still don't get that support and my own story proves it. I think it's about time I actually share that story.

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.