Bringing the blog back to life

It's time to bring back Wildeman's Words! I'm going to be doing some very special works here. It will be a variation of the things I work with and causes I believe in. It's all going to be interesting without a doubt, so I hope you'll be watching.

About those causes. Just what are they? Well, if this is your first time on this blog and you don't really know me, I'm DJ Wilde (author, artist). I have Asperger's Syndrome (no I don't care if its not in thediagnosis manual anymore) Multiple Sclerosis, and a Traumatic Brain Injury. Life is a challenge on the best of days, but I press on and that's an important message I want to convey. Now, I am also the parent of a child with autism (he's 12 as I write this). I grew up without any of the supports you see today and without diagnosis. So those things are extremely important to me, especially for my son. I also want to see more of our autistic youth get the support they need. When someone with autism does something awesome, you may well find it here. Support news? Yep. And every once in a while a rant on some wrongdoing to someone.

As an independent author and artist kicking off his own universe, I'm bound to mention that here. But there's also Galaxy Zento, the blog to consider. I'll be doing articles on independent comic or fantasy artists. People who's work I admire and want to share. Being and independent isn't easy. It's hard to get word out. I'm willing to give some word. Independent authors? Them too! Especially if they have anything to do with the causes above.

So there will be a cool mix coming in the next few days. Tune in!

Handling phobias and fear in autism

Giant Cicada Killer wasp: Harmless to humans

This morning I checked my messages to find a question from Jill on Autism and Phobias that read:

I also came across your posting after googling autism phobias. My son recently developed a debilitating fear of bees and dragonflies. I'd be interested to hear what you were able to do to help your child deal with his flying bug phobia. Right now we are not able to spend time outside. As soon as he sees a flying insect he starts screaming uncontrollably. Thank you for sharing your experience with this!


Well, Jill, this post is for your and anyone else wondering that same question.


The ultimate answer to a phobia is intensive therapy, but there are steps to take before going that route.


The first steps I like to take, and they seem to help, is education. My 10 year old son is also afraid of just about any flying insect that he can see. He worries that they all are bees or specifically the Mahogany wasps we have in this area. 


I think the first thing that gets them is that these are speeding objects that are hard to identify and can't be controlled. This sets off a sensory and startle reaction. Once that happens it's a chain reaction the rest of the way and hard to reverse. He will need a great deal of reassurance and comforting. Reassurance that these insects aren't looking for him. And that's where education of these things comes in.

Green Dragonfly: Harmless to humans

There are children's level books on just about every bug you can think of at any library. Get your hands on some and let your child know you would like to teach him with some pictures about the bugs in your own backyard or at the park. If there's resistance, get him to agree that pictures can't hurt and then start teaching him about them. 


Next step, check Toys R Us for bug toys that he can handle and touch. He may balk but show him that it's just rubber and not real. With things like dragonflies it's safer than with things you don't want him to touch, like spiders. 


Make it a game. See how many bugs he can identify as they fly around and tell you about them.


Through is all, it will take time, constant reassurance, patience, support and a loving attitude. With enough of that, he can start to grow out of his fears. 


Similar steps can be used for fear of sounds, like thunder. Teach about it, make it a game, and use lots of hugging and supporting. And he will want to retreat, the first odd number of times, it will be hard to get him to do it. You must not give up. Our kids take a very long time to make changes. If in doubt and absolutely unsure, consult a specialist.

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.

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.

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.

Losing my coordination

This has been a morning of painful reminders. It feels like my entire  home conspires to beat me senseless. That's not true of course, but when you miss doorways for door frames, walk into walls, open cupboards and crack your knees on everything in sight, well, you get the idea. I feel like a bad comedy skit, and it's a painful one. If there's a way for me to have an accident, I 'll sure find it.

Half our laundry work is done in the kitchen, the washing that is. The dryer is out in our garage storage. It's just the way things are built. Anyway, with the help of a nice tile floor, I managed to step into an empty laundry basket that slid away with my foot. I'm not built to do the splits, let me tell you. That really hurt. It also hurt when I shut the bedroom door on myself.

This is one of the realities of an autoimmune disease/disorder (blast it, I had to stop typing for a few minutes because I couldn't get my fingers to type that last word!). It's more than a little frustrating.

Disorders and diseases that attack your nervous system, like autism and various auto immune disorders, destroy your coordination and balance. Autism isn't known for being progressive, but you change as you get older, believe that.

Children with autism have been found to have motor difficulties. It's why there are so many cases of handwriting problems (for one example). Delays in fine motor skills are not uncommon.

People with MS report problems with dropping things and severe coordination difficulties. It gets worse for any motor skills you don't use. One person who suffers the condition explained to me that basically, "if you don't use it, you lose it". So staying active as much as your condition will allow is important.

Things that help are exercise and motorskill practices. You can check with therapists for ideas on what you can safely do. It's amazing how the simple act of picking something up in your hand can be taken for granted, until you can't do it anymore.

There are no simple solutions, though well meaning folk will offer them.
"Just use a ruler for your straight lines, Dave."
Trust me, I do, but when neither of your hands will hold still, the ruler won't either.

I know I'm not the only one, that's why I'm sharing this today. Today has just been tougher than most. I know there are many people out there who suffer this and feel the same way.

10 years of Denver

Today, my son is 10 years old. I'm taking this moment to reflect on how far he has come in such a short time. I've often referred to him as my little hero and you are about to read why.

Denver has Asperger's (now classified as "Autism") with hyperactive tendencies, social difficulties and sensory issues. Despite his challenges he has always met them head on (sometimes literally). These are some of the greatest memories and achievements as they come to my mind today.

-Where's my buddy?: This was his favorite toddler game. When he started to talk (as he did early on) I would come to get him out of his crib, look around the room, and ask, "Where's my buddy?". He would pipe up all bright smiles, "Here I am!"

-Premature: He was born almost three months premature at 2lbs. Still he came out screaming and only had to be on oxygen once for less than a day. He gained weight quickly and showed us he was ready to be in our big world.

-He learned to crawl and walk early.

-Hydrocephalus: It was mild and self corrected before he was four.

-He had obsessive organization of objects early as well. If something were moved it would upset him greatly.

-Poopie Picasso: Dirty diapers would get smeared on walls thanks to texture sensory issues. If there's any phase I'm truly thankful to have survived, it's this one. As a toddler he had to be put in footie jammies with several safety pins to try and block the zipper. He still got through them sometimes (little escape artist). I can't recall how many times I had to scrub his bedroom walls.

-No boundaries: Nothing stopped him if he wanted something. I remember mornings getting up and finding the contents of the refrigerator all over the floor, pet rats set loose and all during ages of 2 and 3. I once found him on top of the refrigerator eating Cheerios. We also got up to find him sitting in our 30 gallon aquarium with the four pet rats we had (and the aquarium was up on a high stand). He climbed chairs for that trick. He also took apart all manner of "childproof" doorknobs or latches.

-No pain: He developed a sense of pain late. He broke his toe by snagging it in a bit of carpet and falling. We didn't know it was broken until we saw it swell up and turn purple. He also took to taking a running start and slamming his head into his (thankfully hollow) bedroom door. He succeeded in making many holes in that door and one wall.

-Pain: When he did develop pain sensory he explored it in odd ways. His mother sat on a hornet on the couch and it stung her. Seeing what happened as she jumped up and yelled, Denver promptly moved over and plopped down on the hornet himself. The most notable accident that he didn't intend was jumping off his bed into a pile of blankets. In the pile was a die cast airplane that stabbed into his foot. He had to go to the ER for that one.

-Head banging heartache: He had fits as a toddler where nothing could console him. He would bang his head furiously on the floor and have to be held. While being held he would bite and scratch in his blind fury. The only way to calm  him was to cover him with a blanket. I'll never forget how he looked at me one day as I held him and said, "Daddy, why can't I stop?" He had to start wearing a helmet and did so for a full year (at least).

-Potty training: Despite our best efforts, he didn't potty train until Kindergarten when he saw other children using the potty. Just after that we moved to Wisconsin.

-Kindergarten: He had to learn not to bite other children or hit them when angry. We had his diagnosis at 3 years old so his teacher and the school was fully informed. His first school in Lincoln, intended to put him the "behavioral" room and keep him there. His school in Wisconsin kep him in mainstream class. His new school had its own autism library but we would still see difficulties.

-1st Grade: He had to start medication due to uncontrollable outbursts in class. He had a fixation on explosions. He would run up to other children, wave his fingers in their faces and yell "BOOM". They started working with him on social skills and the lunchroom (very loud in lunchroom). His first grade teacher told me he couldn't learn the material and asked if he should be institutionalized. Denver showed her differently by the end of the year. He could literally read words backwards and upside down. He had a classroom aide as well.

-Death of a friend: It was hard for him to understand when we returned to Lincoln a few months after moving to Sheboygan for my Godson's funeral. He loved Zach and the loss hit him hard. He still talks about Zach being his guardian angel.

-Medication Revelation: After being on his medications for a while, he came up to me unexptected and said, "Dad, I can think!" He showed me his home workbook for math, "I can do this!" He was honestly excited.

-Divorce: He went through seeing a his mother deal with illness and our divorce. It was hard on him and we alsoo moved to a new apartment. Because Sheboygan had open choice in schools, I chose to help him by keeping him in the same school so he had something familiar to work with for the year.

-2nd Grade: His teacher was former behavioral education and knew autism. By the end of the year, she confided that Denver had taught her things as much as she taught him. Difficulties in behavior and med alterations happened through the year. We faced challenges when the behavioral teacher asked if he should be institutionalized and voiced concerns about my being a single parent or writing blogs about my child. Though they still worked very well with him all year and he had lots of support; when the same teacher and principal asked that I take him to a different school, I decided it best to do so.

-Death in the family: My father died and we went to his funeral in New York State. Denver learned that he actually likes motorcycles. He gave himself blisters on a small bicycle by pretending to rev like he saw the Patriot Guard doing.

-3rd Grade: Braving a new school and taking a schoolbus. The year went well. He had trouble with respecting teachers and swearing in class. This took the year and a lot of coaching to teach through. He had a great year with very understanding teachers and support.

-Death in the family: His grandmother on his mother's side passed away.

-Big Move: After meeting my wife, Lisa and dating we moved to Louisiana. This was a major adventure for Denver, riding it the big truck so very far.

And now he's almost through 4th grade and about to take the LEAP test. He's in the top of his class for spelling and invited to the school spelling bee. We are very hopeful for him and he has come such a long way and through so very much. Happy birthday to my little hero.

Bad decisions and self punishment

I don't care who you are or what kind of childhood you had, we have all done something we aren't proud of. We have all made bad decisions. That's half of learning when you are growing up after all, mistakes. Some are bigger than other and cost more too, but if you learned something that eventually made you more of an adult, it might have been worth it.

That doesn't mean we should tell our kids to go out and do bad things. We should guide and advise them to the best of our parental abilities. The problem I want to address is when our spectrum kids start to punish themselves for those mistakes. I know I was angry with myself as a child. I didn't know why I kept "screwing up" and began to take a self punishing attitude. Today I have a better understanding and I try to use that with my son. Even so, I still see the possibility of self anger in him. So what can I do to help him understand that we all make bad decisions?

I'll put myself at his level. I remember bad decisions I made and what happened. I can tell him about my experiences so he knows that Dad was a kid once too. I'll be sure to let him know that, today, I'm not proud of those decisions but I sure won't mess them up again. Allow me to give you two examples.

Revenge: I was picked on mercilessly in school and it started in elementary. I was in 6th grade and one of my tormentors was coming at me with a snowball. He intended to shove it in my face, or so he said. He didn't see my friend, Big Jim, coming up from behind him. Jim gave him a bearhug that made him drop that snowball and I did something that surprised them both. I balled up my fist tight in my glove and threw my first right hook ever. Jim was so shocked he let go and that boy hit the ground. I got into a lot of trouble and the Principal asked if I was a bully too. My explanation fell on deaf ears, but I wasn't suspended. All the same, what I did was wrong. I'm not happy about the fact that I did it and I prefer not to get into fights. I'll still defend myself, but I'm not up for revenge. I'll tell my son that hitting didn't solve anything and was a very poor choice on my part.

Competition flaw: Spring of that same year found me walking to school with friends. For some reason we were getting into who could jump the farthest or run the fastest. I picked up a rock and stated I could throw it further than any of them. Naturally they didn't believe me. I said I could throw it clear over a nearby house into the street on the other side. And I went for it before anyone could say anything. I had just as much trouble with my impulses as my son sometimes has with his. The rock cleared the privacy fence and vanished from sight. Even though we couldn't see where it went, the crash of shattering glass was unmistakeable. I was in big trouble. Naturally I ran, and even tried to lie my way out of it. No dice on that and it made the situation much worse. I got a beating, extra chores, and a long grounding. Dad had to pay for the window and I had to write a letter of apology. One bad choice can lead to enough damage without trying to compound it with more bad choices.  Now, if I make a mess I own up to it. I'm the one who should clean up and pay the damage.

Bad choices, we all make them and certainly made them in childhood. We all went through something or other that we aren't proud of today. We survived and hopefully learned a lesson, tough or not. And we all want to be our kids heroes. We want to be that larger than life power for them. But, sometimes, I think it's okay to share our pitfalls with them so they can see it's not so different and not the end of the world. It's a good example for the truth that we must learn from our bad decisions and need not punish ourselves forever on them.

DSM V: A real look

Lately the internet is a buzz with all sorts of chaos about the proposals for the new DSM (V) set for 2013. Petitions are flying, people are screaming and panicking...... STOP. Please stop. And please read this through so I can help you better understand. Your benefits, diagnosis, treatments, supports and what ever else are not being taken away. You are not going to lose your identity or anything else. Lets walk through it, shall we?

Primary complaint is that they are removing Asperger's and Rhett's syndrome from diagnosis in the DSM V. But hold on, that already happened. Yes, it already happened. DSM IV lists the new compound definition as Autistic Disorder. Read it HERE. Click on the tab that says DSM IV and read it.

What does this mean? It means that you either have autism or you don't, period. If you were diagnosed with Asperger's, then you have autism. If you were diagnosed with Rhett's, you have autism. It is not intended to take anyone's diagnosis away. It doesn't change your diagnosis except for the sake of a word.

Why did they do this? The biggest reason is that autism is already really hard to tie down in a category like when they had five forms listed before. It was hard to diagnose and still is. Having all the varied categories actually created more confusion than they were worth. Consider this:

Right now there are still several states where insurance will not cover treatments for "Asperger's" but they will for "Autism". Think about it. The new definition in the DSM means you are actually more likely to get the treatments and support you need because of insurance companies needs for specific terminologies.

Here is a quote from that same link under the tab of "rationale":

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

Be sure to read the tab for the DSM V. You will notice that nowhere does it say that you are not autistic if you were previously diagnosed under one of the five previous forms of autism. All that is happening is a change of terminology, nothing else. 

Asperger's and Rhett's have not ceased to exist, they are simply consider as "Autism". That is all. I hope that people can calm themselves soon and see this before they cause themselves a lot of unnecessary stress. 

Guest artists and Autism!

As some of you know, I have launched and started building on my project called Galaxy Zento. In that project, guest artists are invited to come and draw their renditions of my characters. Special considerations are given to work that showcase connections to autism, anti-bullying, or anti-abuse. Themes are asked to be family friendly. With that, my second guest artist has come into the fold and this is what I wrote in the Galaxy Zento blog:

My second guest artist is Kevin, known as "ayelid" on Deviantart.com. Yes, his name is a link to his page. When you're done reading here you really should check it out! Kevin did a pencil drawing of five GZ characters in one picture. I will tell you right now that this has spurred a short story idea with me! But back to the picture (click on it for larger view), from the top you have King Frederick the giant rat, Bloodraizer the assassin with his secret mentor hovering over him, Victor Darksong, and War Horse. King Fred and War Horse are the heroes of this picture by the way. Below you'll see the original works of these characters. The most awesome thing he did, was to create a connection to autism, that's the puzzle pieces.

I want to pause and make note that you will likely see differences between my drawings of my characters and the guest artist's renditions. But that's what's amazing about sharing views of other artists and I am honored and humbled when ever someone comes in and gets involved. It's about involvement and an interactivity. When it comes to autism education, nothing could be more true or of more importance. People with autism need patience and understanding (in general as not all of us feel this way). They need interactivity to help them get along in a world that never quite feels right. So when someone comes in and does this kind of work out of such generosity, I am truly honored and grateful for it. Galaxy Zento, no matter where it goes, will always stand for autism education. I'm also posting this at both my autism and GZ blog for this very reason.

Now about Kevin, I asked him a few questions. Here is the short interview: ME: How long have you been doing your artwork? KEVIN: I've been dedicated to drawing for as long as I can remember. My parents have photos they took of me studiously doodling away on a little chalkboard or paper and such. I guess a lot of parents cherish and encourage creativity, but my whole thing went beyond the folks just putting the random drawing on the refrigerator lol. I was getting awards and such for drawing throughout grade school and all the way into high school. I was known as that guy who draws lol. I could get other kids to pay me while I was still in elementary school for drawings they'd want done. I never attended college, but I continue to research and learn whenever I can. I began to seriously try to hone my skills and pursue a career with my artwork around my senior year of high school. I've also been a student of the guitar and other stringed instruments for about as long.

ME: What are your mediums for your work?

KEVIN: Mostly pencil and black ink on good thick, sturdy sketchbook paper. It's always fun to try other things just to see what results I'll get, too, such as using a throwaway ball point pen on cardboard. If I'm working with black ink, I may cover large areas that require ink with a paintbrush, and do little detailed work with technical pens. When drawing with pencils, I might sketch the basic structure of the drawing with an HB pencil, and add finer details with a 2H pencil and use a 2B for large areas that require darker shading. I've also tried my hand at sculpting small scale figures, and tattooing, in a proper safe environment, of course lol.

ME: And what's your favorite part of art?

KEVIN: I think my favorite part about the art that I do is the part when you begin to have a drawing or sculpture that is taking form and beginning to look like you've created something. It's nice to make it look as slick as possible, and get compliments from people on it, but that point where you're like, "yeah, it looks like what I was going for" is the most enjoyable, I think.

I think I couldn't agree more! There's a journal on Ayelid's page where he talks about doing commissions and you can see that and his work through the link above. This work will also be posted at the Facebook fan page, faves at my Deviantart page and the website when it launches.

Book about growing up undiagnosed

This was going to be pointers on how you can be an advocate. However, I recently found something that I hadn't seen in some time. It's a link to download my book, Raised in Hell for free. Yes, my first book about living with autism from a very special perspective is free and always has been.

Why is it free? Because I know that families seeking answers already have enough on their plates. If you're wondering about seeking diagnosis and there are problems, read my book.

Why is it special? I know there are a lot of books about people and their autism out there. My book is about what can happen when no one knows what is wrong. It's about growing up undiagnosed. My father was often perplexed on what to do with me as were many. No one knew what I had or what I suffered and I couldn't explain it to them. I believe that frustration is connected to the abuse and bullying I survived. If there were the right education available at the time, my life would have been very different.

So I think it's important, very important to see what can happen. It's just one example and there are tougher ones out there.

So there's the LINK to the page where you can download my story (book one anyway) and hopefully it's thought provoking. Wondering about getting diagnosis? Read this. You'll have to scroll down a ways to get to the download.

Understanding Advocates

First, another looks at Webster's definition: A person who writes or speaks about a cause.

That's me. But there are other kinds of advocates out there, both good and bad. On the internet, the differences get blurred. Hopefully, this article will help define the lines. So what kinds of advocacy are there? Here's a list:

Individual: for the rights of a single person

Self: for the rights of yourself

System/Political: to promote changes in a broader system or promote a broader cause that affects a greater number of people

Legal: legal rights of various degrees (this can branch to the others easily, but issues will require someone with legal training)

Legislative: for changing laws which can branch to system political at times.

So, you've got problems. You're child, who needs and IEP is having trouble in school and it seems the school will not listen to you. You may need an advocate. Like many people nowadays, you turn to the internet and you find someone who says he can help. He says he can force the school system to play straight. Sounds great. Then he asks for money for airfare to come and visit your child's school. He plays on your desperation and you give in. You send the money and he never shows. Either that, or he actually contacts the school and ticks them off so badly they'll never work with you. So how do you know if you have found an advocate who can help you?

This is something I've actually helped people do several times over. My form of advocacy is in education. I believe that the more we learn, the better off we are. I advocate for people to learn about conditions to help erase stigma and abuse. So I give lots of advice for people looking for help.

What to watch out for on the internet with advocates:

Asking for money. Depending on the kind of advocate you are looking for, you shouldn't be looking to connect with them on the internet. Any advocate who's asking for your money, you need to look at closely. As in my last blog post, ask questions. Often they'll make wild claims of what they can do and what degrees they have. If they can't be verified, run. If you ask and they get belligerent, run. Verify all information. Let me write that again, verify ALL information before giving any money to anyone for their "advocacy".

Now let me tell you what an advocate is not and shouldn't be. An advocate is not some special authority who goes around demanding answers of individuals or other advocates for every detail of their doings and lives. They are here to help people, not police them. When Nick Dubin, a well known advocate for autism, was arrested; I was contacted and asked why I wasn't demanding answers and writing blogs about Nick Dubin. Simple, because that's not what an advocate does. I'm not trying to write the National Enquirer of Autism here (some people are and do). I'm not writing the gossip column of autism either. That's not what an advocate does. That's not an advocate, period. Now, there are plenty of advocate blogs out there and some of them are indeed doing just that, some aren't. You have to judge for yourself, what kind of information you are looking for. But I challenge you, look up definitions for yourself of "advocate" and see how many times you see "vigilante" or "gossip columnist" in the description. You won't.

Now, what's the best way for you to find help for your child? Every place and state has lay advocates of some kind somewhere. You just have to know where to look for them. Here are some updated ideas:

-Look in your phone book or online for your states Ombudsman's offices. Call them, they can often give you solid advice of where to go if they can't help you themselves.

-Contact your state's chapter of the Autism Society. You can google it by "state name" Autism society, try it. They often have lots of links with people and groups you can call.

-Google for your state and a chapter of NAMI (National Alliance for Mental Illness) and contact them.

-Contact your states or county school board and request a hearing for your child. Most times, this costs nothing and it's part of your rights for your child.

-you cold google School Advocate and your area, town, county, or state and see what you get, but remember the above.

Just a few ideas. Do you want to be an advocate? In my next writing, I'll tell you the do's and don'ts from personal experience and more.

Holiday scam season

It's that time of year where finances run high and people are out after your hard earned dollars. Unfortunately, scams are everywhere and you have to watch out. It's gone far beyond your doorstep or phone. Now it's all over social media sites and you might be surprised at who gets involved.

Donations. This is one of the worst because they tug at your heart strings and make you want to help out. People will claim they are collecting for some family who went through a fire all the way to collecting for big name charities. Well, I'm about to give you some pointers to avoid giving your money to unsecured donation scams.

First is a big rule you need to follow. Make it your policy and don't break it. When people come to your door or call you on the phone for donations, DON'T DO IT. Almost no one goes door to door for sales anymore because of all the scams and dangers involved. None of the big charities do this. NONE of them. Even school fundraisers have instructions telling kids not to go door to door. That's not to say you have to worry about little Jimmy next door. If you know him, know his parents, and know his school, you're probably fine. Even the Girl Scouts aren't supposed to go door to door anymore. I know that's a bit extreme, but it's to deliver a point. Joe Blow who you don't know is in your area selling magazines for the Autism Society? WRONG! Get it?

Now, as for those people claiming to collect donations for big charities, there's a few things you need to know. Here is the most important:

Anyone, ANYONE, claiming to collect donations for a major charity or organization (who is not part of that organization) MUST do so with the approval of that charity or organization. If they don't, they risk themselves towards things like jail time.

Even if a person is legitimate and still doesn't have approval of the charity organization to represent them and collect donations for them, they are doing it WRONG. I have personally seen people get into trouble for posting that they are collecting for the Autism Society or March of Dimes when they had NO approval to do so.

Check this out LINK. This man was arrested for selling raffle tickets for the Make a Wish Foundation. He even claimed to be authorized but he blew a big rule. NO door to door! On top of that, Make a Wish said he was never authorized to collect donations in their name.

Make a Wish's official status is this: Anyone collecting for them in any fashion must do so ONLY after going through an approval process. That will result in a signed agreement and letter of authorization that one must be able to show upon demand.

So, even if someone is collecting legitimately, one phone call could get then arrested. Protect yourself and do it the right way if you are considering this. If someone can't show you they are legitimate (as pretty much ALL the organizations do it this way) don't give them you're money. Don't give them your money for this, no matter what.

But how else do they look convincing past that?

Maybe they are selling something? Doesn't matter. If they claim proceeds go to a named organization, they have to protect themselves by following protocol. Otherwise you just can't be sure.

Maybe they say their kid is doing it. Same answer as above. People use their kids for personal gain all the time and it's pretty sickening. "My child has cancer and six weeks to live. It's his personal wish to give to the American Cancer Society and he'll draw you a Christmas card for just five dollars so he can give." (note the quotation marks, I am NOT looking for donations at all), I have personally seen this one on the news with parents who's child wasn't sick at all. They even did the Christmas cards and were caught with over 60,000 bucks!

Maybe they claim to be advocates or some special interest group? They might even have a list of tips like this on their website. That's right, they'll advise you on how not to be scammed by practicing due diligence their way. Well, just throw their own questions back at them and see what happens. If they are legitimate they:

-won't get offended
-won't insult you or bash you in any way
-will give you a DIRECT answer
-will be able to show proof requested

When they don't give you a direct answer based on above... run.

So what do you do when you come across these people?

Two things:

1: Do not confront them. Even on the internet. Many of them are willing to be major internet bullying nightmares and you won't hear the end of it for a long long time.

2: Call authorities and inquire. Call the organization and inquire. Leave it at that and don't buy or donate if in doubt.

It's really just that simple. Protect your money and don't give it out to support fakers and scammers. Be sure to check in next time for another survival blog dealing with advocates.

Social interpretations

One of the things I see my son struggling with is social interpretations. He thinks he means one thing, while everyone else sees his activity as something else.

This morning a lesson came to being when he was caught tormenting the cats with a roll of wrapping paper. He thought he was "just playing". The cats didn't agree. So, I devised a lesson to today to help him how things are socially interpreted.

Interpretation is how we understand something we see or hear. Because of varying points of view, interpretation can be very broad and different from person to person.

For this lesson I made four flash cards and asked him what he saw of each one.

First, (you can click for larger view) the top photo. He said someone was punching someone else. I asked him, what the thoughts might be of the two people. What if the person doing the punching really thinks he's "just playing". Does the person taking that punch feel the same way? And what if they are both "playing"? Will people who see them think they are playing? Things we see in social settings are at the mercy of interpretation. It's why we have to be careful of the things we do.

Now take a look at this picture. It looks like someone is crying. Why do people cry? Are they hurt or sad? That's the automatic thought and usually true. But what if they are crying because they're happy? What if they just laughed so hard, they couldn't help but cry? What if they just have allergies and it makes their eyes tear up? It's hard to judge from just a tear in the eye, but this demonstrates how many ways something as simple as a tear can be interpreted. Of course, the best thing to do is ask why they're crying, but that isn't the lesson here.

Next we see a person running. Why do people run? Usually it's for two reasons; to get away or to get to a place. People are either running from something or to something. Many times it's both. So why is he running? Is he in trouble, late for class or scared? There are many interpretations that can be made from the sight of someone running down the street. Mind you, I'm not adding anything else to the scene of the person running on purpose. Try to add interpretations only to the act of the person running. How many can you come up with?

Finally we see a person pointing and laughing. The second person is frowning. What are their interpretations? Is the person laughing being cruel? Maybe. Maybe they just thought something was honestly funny. The other person likely doesn't understand and may accidentally have their feelings hurt as a result. And how many ways can this scene be interpreted by a third person? Finally, can interpretations get us into trouble?

Our discussion was very thought provoking and my son appeared to get a lot out of it. Could your child use some interpretation advice?

My neuro update

So, yesterday I made the hundred mile drive to Shreveport to see a neurologist about my MRI. It was a good visit. She listened to me, answered my questions, and formed a diagnosis plan.

We did a big blood draw for an auto-immune panel. This way, if it's not MS, we can see if it might be one of the other auto-immune diseases. It's not easy to diagnose these on just an MRI after all.

I will be scheduled for a new MRI for after the holiday to see if anything has changed. If nothing has changed, it's not likely MS. If it has changed, then it may be MS. If it's not conclusive a lumbar puncture is the next step.

I really felt good about this trip. I wasn't treated like it was all in my head or that I was a waste of time. I didn't feel like I was the next project on the conveyor belt. That alone was enough to make me feel like this trip was a step forward. So, the fact that this takes time and multiple tests is easier to accept.

Step-parenting and special needs

It's tough to be a parent of a special needs child. It's even tougher to come in as a step-parent to a special needs child. I'm going to sing some praises today and I hope this also serves as useful information to you who read this.

The step-parent is the one who is coming in, late in the story of your child and has to take a major crash course in your child's needs. They weren't there from the beginning like you. They didn't have to deal with diagnosis or all the research you've taken years to do. They are, for lack of a better term, taking "baptism by fire". Statistics aren't kind to these relationships either.

If your child is lucky enough to have a step-parent like my son does, you'd know they deserve a great deal of praise. My Lisa deserves just that.

Not only has she tolerated a great deal with him, she's stepped up to bat, rolled up her sleeves, spit on her palms and gotten to work on the matter. She's been a great partner. She catches things I miss and taken her position as a step-parent very seriously.

She was the one who insisted that our boy needs a dog. Even with his fear of dogs, she found one that now plays and sleeps with him. She helps him with his homework more often than I do (even though he tests her by giving up easily or throwing fits). She pays him a small allowance for a clean room once a week. She easily pays for half of his rewards for good days, weeks or months. For that matter she printed him a brochure reward menu with his picture on it. Then she has a hard time sleeping from time to time with worry that she's doing okay with him.

We need to remember what our step-parents put up with. The best step-parents are the ones who are able to be "parents" in spite of the challenges. This is especially true in special needs families.

When it comes to being a SP of a special needs child, you have to be prepared to get your hands dirty. It's hard and there's a lot to tolerate. For many it's too much. And it can be tough on in-laws too, no doubt (just to mention).

So what do we do, that makes a success of our story?

Rules: We are on the same page with the rules and back each other up on them. If she sends him to his room for something he did, I back it up. If we don't agree on a discipline, we discuss it. We don't let him play us against each other.

Activities: We are all involved on this. She's constantly on the look out for activities he might enjoy as rewards or just in general.

Family Discussions: We talk about important issues together and he is included.

Respite: Uh oh. I have to admit, this is where our current difficulty lies. You must have respite and a break from time to time. You need to go out on dates with your partner and let someone else help with the kids. I'm sure, though, many of you can sound off here and show that you have a hard time with this too. The realities of child care will likely be my next blog. It's hard for several reasons. Yet, it is oh so needed and important. I can tell you that because we don't have it right now. We feel the pain and know what it's like.

Step-parents, should also start things out slowly. Get to know the child and spend time with them. Don't move into disciplinarian right away. That comes with time if at all. Parents should also never allow disrespect of a step-parent. Learn the needs of the child and take up a teamwork approach in fulfilling those needs. With us, my word is the final one on what is done with my son. However, I have great respect for her input and we've done a lot to help him through various difficulties.

United you stand, divided you fall. It's hard work, but also very rewarding. Our kids have their best chances (even when it looks bleak) by what we do with them now. I see it in my home, and hopefully many of you do in yours.