Wednesday, December 29, 2010

Our holidays 2010

So, how was your holiday? Did you remember or have a way for your spectrum child to take a break or de-stress? Did you have to use any of your safeguards? Well, our holiday season has been quite an adventure.

We took a journey in an 18 hour drive to Louisiana. This made for bored 8 year old in the back seat for a very long time. The drive down there from Wisconsin was done all in one shot. Yes we stopped for breaks and gas (ha ha). To go on this trip and when I have done others, an activity center is available for my son. It involves a small bin of his favorite toys, his DS game console, coloring books, crayons, and anything else that may help distract him. Distractions did not work so well on the trip to LA. So, needless to say, it was a hard trip. But let me tell you just a little more.

We left in the middle of heavy snow and ten minutes into our journey we were in a ditch. We needed a tow truck to winch us out and that certainly made for an interesting start and an agitated child who went into anxiety land. When I travel as a passenger I have to take dramamine. It's part of my sensory issues. Well, I forgot and got nice and nauseated on the trip in the first hour after being back on the road. But I took my med and felt better in another hour. After that, except for sore legs and buttocks from driving, and a whining child, things went fine. The weather cleared and all went smoothly. We got in to our destination around 9 pm and crashed thankfully on an air mattress.

Our stay was great. My son never really needed any retreat and enjoyed playing with a boy close to his age. He also spent some quality time with dogs. My son is afraid of dogs but he got to meet dogs that were genuinely nice and did him a great deal of good. This includes a total of five dogs in two different homes. One of them was one of the sweetest German Shepherds you could hope to meet. My son got to play in a huge back yard, jump on a trampoline, and just have an all out good time. We also tried new foods, like a four meat gumbo (chicken, shrimp, crawfish, and sausage). Our holiday meal was a feast of great proportions and of excellent selections. I mustn't forget to mention that we also took a trip to the zoo in Monroe. Most enjoyable.

Christmas morning was exciting and my son was beside himself with his gifts. New games for his DS that actually worked on keeping him distracted on the drive home. He had a couple of fits, but no where near where my own anxieties dwelled.

We broke up the drive home into two days and even that still had us exhausted. It was easier on kiddo though, and us too. His DS kept him distracted along with an IPOD that my girlfriend put some apps on for him. Mostly the DS though.

I'm not saying my son's behavior was perfect though. He was way out of routine and that caused some erratic behaviors and a tough bedtime and one tough morning. But, like it said, it was better than I thought. I hope that all your holidays turned out wonderful. Best of luck as we head into a new year!

Thursday, December 16, 2010

Understanding Autism for Dummies in depth

So what does this book really have to offer? In my last blog article I told you about one in particular section. Today I am going to tell you just what this book has to offer you and why I think it will help a lot of families.

First of all, the "For Dummies" franchise has a reputation for making information simple enough for the "layman" who doesn't know jack about the subject at hand. This book carries that reputation nicely. I have to admit, I will likely be quoting this book often as a resource in the future. This book is written by Stephen M. Shore and Linda G. Rastelli (and EdD and MA respectively).

In the beginning of the book is a handy cheat sheet with exceptional information listed as: Inquiring about Interventions, Important Acronyms, What to have on an emergency ID card, Helpful autism websites, Getting the most out of your child's education, Preparing for emergencies, Communicating with autistic people. And the ID card has a front AND back with great info.

The foreword is written by Temple Grandin, nuff said on the department. It compliments the book nicely and you just have to read to see for yourself on that one.

The rest of the book is neatly arranged and meant to be read in the parts you need. You don't have to read the book cover to cover thanks to the indexing and chapter positions. Each part of this book and it's chapters are clearly labeled. Here they are:

Part One: Understanding Autism: This section is all about classifications, treatments in general, ideas on where autism comes from, getting a diagnosis, and where Asperger's fits on the spectrum.

Part Two: Addressing physical needs: Medications and treatments are talked about here. Biochemistry and nutrition are also touched on in this section.

Part Three: Enhancing learning and social skills: I'm going to list the chapters as they appear, should tell you all you need to know about this section:
-Choosing an appropriate behavioral, developmental or educational intervention.
-Dealing with learning and sensory differences.
-Finding a learning environment that fits your child's needs.
-Legally speaking; Making the most of your child's education.
-Fostering healthy relationships.

Part Four: Living with autism as an adult: This is about life after high school and touches on special needs planning and getting into healthy relationships. It even talks about romantic relations and adult friendships.

Part Five: The part of tens: This section is where the quotes are in dealing with things that people say and do in public regarding you or your child. It includes the first ten things you should do after a diagnosis.

The appendix lists a long line of places to go for more help. The whole book goes farther and deeper into the information that I show here. It's a book with more than 300 pages and all of them are very useful.

Nothing is perfect for everyone, but if you wanted to get a guide on autism, this is the place to start. I got my book for less than fifteen bucks (including shipping) on Amazon. It's cover price is still affordable at 19.99. You may be able to find it at used book stores too for even less. Check around and get this book. I can't advise it enough. Every autism library should have it.

Monday, December 6, 2010

Understanding Autism for Dummies

How do you tell people your child has autism? How do you tell people you have autism?

This is one of the questions that was presented when I asked friends on Facebook what readers want to know about autism. It's a very good question. In looking at that question there is a reality we need to take into consideration.

Most strangers just don't care. They only care about what irritates them as they move around in public.

I know that seems harsh, but it's true. While we want the general public to understand our child, it really only matters for those who will be working with him or her directly. It counts for those who are supposed to care about our children, be teaching them or spending copious amounts of time with them. That is where to start in telling anyone that our kids have autism.

Now, in continuing to answer this question I want to tell you about a book I recently purchased on Amazon for about 15 bucks (including shipping) called, Understanding Autism for Dummies. You may already know of the "for dummies" series. It's excellent in "dumbing down" technical information to make it easy for just about anyone to understand. Let me tell you about this book by Stephen M. Shore EdD and Linda G Rastelli MA with foreward by Temple Grandin... it's a GOOD book!

I will go more into the makings of this book that you should go buy RIGHT NOW in another posting, but for now I want to go over chapter 17. It's about Ten ways to respond to questions or comments that you will deal with and may recognize. Please note, I am going to quote the book somewhat directly with proper credit intended to the authors. I am going to do this in the format of the comment, followed by why it's inappropriate (it's problem) and responses the book suggests. You should get the book for the full message.

Comment: What's his special talent?
Problem: Reduces your child or you to the status of a circus performer or social oddity (though the question is innocent enough and not usually intended to be rude).
Responses: "Some autistic children have special talents and some don't, just like the rest of us. What's your special talent?"
"I don't know, but I can tie my tongue into a knot."
"We don't think of him that way. We think everything he does shows talent, considering how hard he has to work to overcome his disability."

Comment: Why can't you control your kid?
Problem: Assumes you are just a bad parent.
You can tell this person that your child has autism if you like. I have found, in some communities, people are getting more understanding. They lose the glare, nod and walk away. But some can't be helped. The book doesn't really give responses in this, rather advice. Don't let these people get to you. Yeah, easier said than done, but you have to remind yourself that this person simply doesn't KNOW. Some things I have said when someone gets invasive on the point:

"Sorry, but standing there staring is rude too."
"Thanks for your input, have a nice day."

Then I ignore them.

Comment: Asperger snausberger, he looks fine, he just needs a better attitude.
Problem: Dismissal of his condition and what I like to call "assumption of brathood".
This falls in with the above and the book makes a suggestion here. You can carry pamphlets on autism education or a card that simply has the name of a website such as The follows the same train of thought I have after that. You can only educate the open minded. Pass them by after that. You have your hands full enough without them.

Comment: Who did he inherit it from?
Problem: Implies that someone is to blame.
You tell them that genetic research has found that there are hereditary factors but they are very hard to be sure of. Or, you can go for the humorous angle and claim responsibility with pride. If your spouse is with you, the two of you can both claim responsibility and maybe even mock argue the situation a little. The truth is, that while this is ignorant (thought innocent), it really has little to do with how things have to be handled or how you and your child have to live with it.

Comment: Why should your child get special treatment?
Problem: Dismissive.
The book explains that you and your child have rights to proper support where needed (such as in school) and it's just as simple as that. Most people in public don't seem to hit on this one, but that doesn't mean you won't come across this very rude person. Refer them to the Americans with Disabilities Act and the idea of general human decency. Then walk away.

Comment: Are you kidnapping that child?
Problem: Accusatory and dangerous to you in public.
You have to handle this one gently. The more you get defensive and offended the more others will judge you in a negative light. Use the power of education here and explain the situation as best you can. Most people who are truly concerned and security personnel will understand and back off. Sometimes others who are nearby who also know autism will chime in and help you. This has happened to me personally.

Comment: (sort of) The "Bad Parent" glare.
Problem: Accusatory without words and very uncomfortable.
Remember what I said above. You can also say, "Excuse me? Can I help you?" and draw attention to their own rudeness. Be sickening sweet about it too. Be nice. It shows all others around the difference in public behaviors.

Comment: Is she/he still in their own world?
Problem: Assumes that all autistics are in the same box.
The fact is that we are so aware of our world around us that it can be painful. As the book says, imagine having to go through your day able to hear (loudly) the ticking of every clock in the house, or being driven to distraction by the crinkling of a plastic bag someone is shoving under the sink (from even the farthest room in the house). Imagine not being able to filter out the input your brain is trying to take in. There are a couple of responses suggested for this. Here is the more bold approach (even the book says this about it so use with care)
(Staring blankly say:) "Who else's world would she be in? I mean, really. It's not like they beam us all off the planet at age 22 is it? If they did, I missed my flight, darn."
The second is a longer winded approach but suggests that you basically explain that autistic people tune out as a defense mechanism against a world that is too bright, too loud and full of innuendo that's hard to understand. Inform that such a question is a good way to annoy an autistic person. They understand more than most people realize.

Comment: They grow out of it, don't they?
Problem: Assumes that it's just a phase and is dismissive.
This person needs to know that autism is with us for the rest of our lives. I have personally told people that my son will grow out of phases that they see and be able to live life to break assumptions that he will always be the way they see him now. The fact is, autistic people grow and go through phases like anyone else. They start as babies, children and then make it to adulthood.

Comment: But she doesn't look autistic.
Problem: Truly ignorant and dismissive. Assumes that there is a special "look" to autism like a missing arm or leg.
The defending information is that autistic people look just like everyone else. Autism is a biological disorder in the brain. It may affect some aspects of how the body reacts, but does not change physical features. Also, for those who mention Rain man or some such thing, it should be mentioned that not everyone has that effect. If they do, they still "look" like everyone else.

So there are some tips from the book: Understanding Autism for Dummies and I strongly suggest giving it a read! There are lots of ways to respond to the ignorance of others, you can be quaint and educative or slightly sarcastic and have fun. The point is not to let them get you down and keep you from living a good life.

Thursday, December 2, 2010

What does stimming feel like?

I found this to be a very good question. While a couple of readers took time to answer it on my wall at Facebook, I wanted to make sure that I answered it here too.

Stimming is generally a repetitive behavior that persons with autism may engage in. It may include rocking, hand flapping or gesturing in the air. It could be foot tapping, leg bouncing, or even something vocal. It could be clapping too.

Why the stimming? Sometimes, and I think most of the time, it's a calming way of directing energy or dealing with stress. It can also be totally unconscious in it's application and therefore much like a "tic". The difference being, once you notice you are doing it, you can stop it. Tics are harder to do that with. I have a tic in my neck that makes my head jerk to one side at times. I can't stop it if I want to. It just happens.

Stimming can have almost meditative effect on many of us. It allows us to either escape or cope with a given situation. But how does it feel? I think it feels like anything feels. Take something that feels good to you and calms you and consider that.

Lets consider a stimming of rubbing ones hands together. Try it. Rubbing your hands together makes them feel warm. It may not calm you, but to someone with a sensory disorder it could feel as good as a Sunday back rub. It could bring calm to their mind and be relaxing to them. It's hard to say how anything feels with clarity because everyone "feels" differently.

It's best to remember that it's usually a positive thing and helpful to someone with autism in dealing with the world around them. It's usually rooted in the sensory of the person as well.

Are there negative aspects to stimming? Yes, if the stimming is disruptive, considered gross or unhealthy, or could put someone in danger, it would be a stim to try and work out of. Stimming is very hard to correct and can be a powerful habit. Can these habits change? Yes, in our children who are growing up with autism, their stims can change as they age.

Unless it's proving to be dangerous or hazardous to health, stimming should not be punished or heavily discouraged. Punishing the behavior will have very negative results and be extremely frustrating for all involved. Can you imagine punishing someone for rubbing their hands together? Who are they hurting? And it's a powerful impulse. You may as well punish them for breathing.

So I hope this brings some stim understanding to you. Feel free to post examples of stimming as you know it in comments.

Sunday, November 28, 2010

"I hate your autism."

First,note the quotation marks. I don't actually hate anyone's autism, but you've heard this quote before perhaps. I know I have. It's a quote that reeks of intolerance and lack of education. It can also come from frustration and lack of understanding.

Those of you at my facebook page may remember a question I posted some time back. I asked what readers want to know about autism. One parent posted that he wanted to know how to get rid of autism as soon as possible. He hates his child's autism. Now, I'm trying to address his quote and this reaction in other was rather than be negative and I hope the rest of you take it the same. I believe this man and many parents like him are frustrated and at wits end. They are having a hard time understanding their child and how autism takes affect.

From this point of view, I want to remind you all that there is no cure for autism. Let me repeat that; there is no cure for autism. One more time, there is no cure for autism. At least, not yet.

That being said, the first thing you must understand is that autism is a biological condition, not a psychological one. It has psychological co-effects, not it is not psychological at it's source. Autism is caused by various connections in the brain that are not communicating properly if at all. That's how everything in your body works, you know. Your brain tells your heart to beat, your lungs to take in oxygen and controls how your senses take in information. That's the key here. How your senses take in information shapes how you interact with the world around you.

Some of this can be overcome with years of practice and support. However, autism will be with a person for the rest of their life. There will always be difficulties. The sooner you accept that as a parent, the sooner you can be your child's best coach in how to survive and live with autism. Without that support, especially without your support, your child's future is bound to be uncertain and random.

Another aspect to consider. When someone says to me, "I hate your autism" (and it's happened), it hurts. It hurts especially if this is someone I trusted and let close to me. What a terrible and unfair thing to say. It's even worse if you are a child and a parent says that to you. It's confusing enough to grow up with autism, trying to figure out how to work with the world when your brain won't process things normally. Add emotional turmoil with a parents disapproval and it's much worse. It's not the child's fault they have autism. They can't wad it up and toss it in the trash for you. As it is, children with autism have a tendency to take things very personally and literally. You may as well come right out and say you hate them personally. They are likely to take it that way.

It's important to learn all you can about autism and how to teach your child how to live with it. You have to know that this process will last their entire childhood to the rest of their natural life. Be part of their lives. Autism is not the end.

Wednesday, November 24, 2010

Passing Thanks (dedicated to Donna Carmen)

She was one never afraid to speak her mind. That was my Grandma Carmen. If she had any opinion at all, whether you asked for it or not, she would give it to you. It may not be what you wanted to hear either, but she was very honest. Thing is, I don’t ever remember her being wrong. She passed away in the hospital just yesterday and tomorrow is Thanksgiving. Yes, that creates an interesting array of thoughts. As I sit here and remember her, I realize that I’m thankful for having her in my life. She was very influential to me and one of the most supportive people in my family.

She took me in when I was stranded in the streets of Los Angeles at 17 years old. I was a troubled and random kid who still didn’t know that he was autistic or what that meant. Her strong honesty and direct communication guided me towards finding a job and doing for myself. I didn’t always like it, but it worked.

When I learned about having autism, she was one of the first family members to take immediate interest. She often had articles and people to tell me about when spoke after that. Like everyone, she knew there was something going on with me, but no one knew what it was.

I remember Fourth of July get togethers, family reunions, home shopping network and football being a big deal around her house. I remember the giant satellite dish and Grandpa’s giant ham radio tower antenna. I remember more Avon “shaped” cologne bottles than I ever saw in my life.

I remember anytime I was hungry while staying in her home she would say, “the food’s there to be eaten” and “If you leave hungry it’s your own fault”.

So I have a lot of experiences to be thankful for and I learned a lot that helped me in life. I’m very thankful and that is what I am carrying into my Thanksgiving this year.

Monday, November 22, 2010

Autism and holiday gatherings

I know of many families who don't go to holiday gatherings anymore because of their child's reactions or unsupportive family reactions that are involved. For some of these situations it's understandable. But if you have a high functioning child you may be depriving them of important social practice. That being said, it's that time of the year to consider all the things we need to do for our kids to survive the social dramas of the holidays.

Holiday gatherings fill a place with extra sounds and smells that can trigger the more sensitive of our kids. There have been times when my son just wanted everyone to go home because he couldn't take all the mixed voices anymore. The extra mix of smells from varieties of food cooking can be a trigger too. While the typical person finds all the odors a delight, too many can overload an autistic.

Can your child handled a holiday gathering? How well does he or she handle crowds? How big of a crowd? How loud? Compare your child's sensitivities that you already know about to what you know of your family's gatherings (if you haven't tried already) and you can gauge their reactions.

How do you handle the hard spots? How do you handled the possibility of meltdowns from sensory overload? As a matter of practice, remember to plan an escape route to a designated "quiet spot" where your child can feel comfortable and relax for a bit. A place to hide from the sensory input. If you are going to another persons home, you should discuss this option with them and see if they can work with you. If you have unsupportive family, this may be difficult. Understanding that, your child's welfare is more important than any holiday gathering. You should take no shame in having to leave early or just not going.

If you don't go, be sure to share some holiday experience with your child at home. Cook things that have some of those smells and get them involved in your own home festivities.

Another way to help with possible problems is to have things there that are positive distractions. Things that your child loves in the sensory realm. For example, maybe they just love the crinkling of wrapping paper in their hands? Let them play with it. It's better than a meltdown any day and comforts them. For that matter, some are best left with their special diet and what they prefer for the day rather than forcing them to what you know they may not eat. This will keep the peace for your get together and everyone will be happier for it. Try not to forsake any routines so you can help them say as balanced as possible.

What's most important is that you know your child and know what affects them and how. You are the one who can help them the best. Be their holiday advocate and you can find ways to get through the holidays easier.

With that, I wish all of you a very happy holiday with many happy tidings involved.

Do you like heroes and online reading? Be sure to check out Galaxy Zento

Wednesday, November 17, 2010

Radio Therapy Online

Today, if you haven't seen it on my facebook page already, I want to introduce you to Radio Therapy Online. You can check out their website HERE.

Quote from their site: Radio Therapy Online's mission is to present fun, interactive, positive podcasts in a humorous way; to provide "therapy" for broadcasters and listeners; to spread the passion for life. The hosts are Todd Michaels and Lisa K.

It's true, they do exactly that and I want to suggest that you listen in and check them out. Along with in depth interviews of interesting and influential people, they touch base on all manner of helpful topics for life in general. Food, organization, holiday issues, health issues, and even a touch of politics (without the hate) are things you will hear about on the podcast.

The atmosphere is light and uplifting and the hosts have a definite chemistry that carries the show forward. You never know what they are going to toss at each other next in good fun. They've even started doing a youtube bit called the Radio Therapy Insider.

Yes, I've been on the show myself, some time ago. Still, I listen to the show and find it be a positive and refreshing change from the standard and often negative media that's out there today. So I do hope that you will listen in and give it a try.

Monday, November 15, 2010

Looking ahead and concerns for our youth

Sometimes I find myself thinking about all the monsters out there in our society. I find myself realizing that I must teach my son to defend himself against them. It's a very complex mode of thoughts.

If I were only talking about physical altercations with school/work bullies or some mugger somewhere, it would be simpler. If I were only talking about stranger danger, it would be fairly concrete. But no, it goes much deeper than that. It can also get far more convoluted.

There are many kinds of human monsters out there and the ways they will seek to do damage are as diverse anything we know. Some of them victimize for possibilities of money, others for some perverted pleasure. It reminds me of one of the types of bullying I had to live with. There was no defense against it and it worked very very well.

It was done by some very good acting and sounded very convincing. Once I was sitting by the projector in class as the teacher was talking. One student piped up and said, "David, leave the projector alone". He sounded convincing and the teacher bought it. They already thought of me as a "problem child" so it was easy to get me into trouble. I was thrown out of class without touching the projector or anything near it. The boy thought it was outright hilarious.

False accusations and other ways of being used are things I fear for my kids. Our kids on the spectrum are reported to having trouble with areas of trust and even being too trusting, or gullible. Unfortunately, this is one fire that has to teach it's heat in it's own way on many levels. You can't teach them to watch out for everyone and everything. You can only do your best to teach good decision making. Teach that if something seems wrong, don't do it. Even that won't protect them from someone who will prey on their good intentions.

It's also sad, that onlookers will take this little act at face value and leave the victim hanging for it. That we haven't learned in our society by now, too look deeper than the surface of what's happening. That is how innocent people get smeared and marked because others don't stop to look at the details that matter. That's why we are all supposed to be innocent until proven guilty. But that doesn't seem to apply to general society. Something that needs to change.

Until it does, I will have to do what I can to help my son prepare for the predators out there. They never stop coming. I'm still a target and I'm forty. It's a very sobering fact. So, as you walk around out there today, try to take notice of the underlying details. Ask yourself what all the possibilities could be. Just to see what you can come up with. And try not to take that person you saw, or how someone else marked them, at face value. If it really matters, seek out the truth for yourself.

Picture of Nelson Muntz property of FOX.

Monday, November 8, 2010

Falling back and internal clocks

Here's a funny for you; daylight savings and a supposed extra hour of sleep. Yeah right. My son's internal clock is set for almost no later than 7 am. He doesn't like being woke up before that, though it's necessary for school days. Weekends? 7 am. Do you know what that meant for this weekend with the falling back of an hour? That's right, 6 am.

As far as his very sensitive internal clock was, it was 7 am and time to get up. This is not such an uncommon phenomenon and not exclusive to autism. Still, you have to try and see the humor in the situation, while you'd much rather get that extra hour to sleep in. The idea of getting up at 6 am on a weekend, when you don't have to, is never a pleasant one. If you're a naturally early riser, more power to you, but I'm not (ha ha).

So when Mr. Bouncy came bounding in and I looked at my cell phone, I groaned. I couldn't believe he was up at six and I had completely forgotten about the time of year. It wasn't until I went out and saw my kitchen wall clock and looked at the calendar that I realized what happened. Then all I could do was shake my head and chuckle. I could try and tell him it was too early to get up, but no dice there. When he's up and ready to go, he's up and ready to go. For that matter, he has more energy than anyone in the building when he's awake and has trouble controlling it.

So, that's that, we're up and there's nothing to do about it but get the day going. How did your weekend go? Did you get an extra hour?

Thursday, November 4, 2010

Facial expressions and autism

I can't tell you how many times I've been asked "why are you angry?". The point here is that I had no idea I was angry in the first place. That would be because I wasn't angry at all. It's just something my face does without my notice.

In autism, it's not unusual to have facial expressions go awry. The way I see it, there are three reasons for this.

1: Lack of control over facial expression in the first place. It's like having a connection that just doesn't work from our emotions to the way we show them on our faces. This doesn't always work the same every day. Like anything else, there are good days and bad. This also doesn't work with every emotion the same. Sometimes we can show various emotions just fine while others don't come out quite right. It can be hit and miss.

2: We aren't reacting to what you think. Think of a car accident. Everyone reacts with typical shock at the sudden disaster. Everyone except the autistic person who is laughing. Everyone assumes they are laughing at the car accident, but they aren't. They've noticed something that took their attention away from the scene of the car accident. That's because of how hard it is to filter information. Every tiny thing around us demands our attention and our brains are trying to process it in one giant bite all at once. To that autistic person, the thing that made them laugh is just as loud and demanding of attention as that car accident is to everyone else.

3: Sensory experience. I knew of a child who would scrunch up his face over and over again. When asked why, he honestly replied it just felt weird. Sometimes, what you are seeing has nothing to do with emotion at all. It may be as simply defined as a tic or form of stimming. I believe stimming is highly attached to sensory experience. It's calming and soothing, maybe even fun. On of my son's stims is literally running in circles. He sometimes does it with a great deal of giggling and laughing. He must be having a good time right? So if someone stims by face scrunching or eyebrow movements, it's safe to say it's about the same (I think).

With those examples in hand, I think it's safe to advise not to take an autistic's facial expressions too seriously or to heart. What can you do? The best plan of action is to simply get to know that person. After all, they are a person at the bottom line and that's the best way to understand how they personally feel about anything. I've been told by neurotypical people that it's "normal" to have your quirks. Well, if that's true, why so much confusion? If you want to know what any persons quirks are, get to know them. This is true in the light of any condition or disorder. The main idea is understanding and not blaming someone for what their condition or disorder causes.

Facial expression is a major factor in non-verbal communication. That could make getting to know that person a little tricky or awkward. But if you subscribe to the idea that it's okay for everyone to have their quirks, I'm sure you can manage.

Photo credit: My son showing me his loose tooth last year.

Friday, October 29, 2010

It's bigotry that needs to "die"

Today I want to talk about our school officials and the trust we put in them. Especially the trust we put into those we vote for and elect into place. We trust these people with the task of taking care of our school districts. We trust them with the well being of the education system of our children. Violating that trust is a heinous act.

Clint McCance is a board member somewhere in Arkansas who's earning his fifteen minutes of fame for violating that trust and being a true blue bigot. Recently, there was a day where people were asked to wear purple for five teens who committed suicide after being bullied for being gay. Point to consider: TEENS! That means, for all intent and purpose, these were children. Okay? So, recap on important points: School Board Member, Children.

If you click on the picture, you can see the direct quote from Mr. McCance where he suggests that suicide is appropriate for these CHILDREN.

I feel sorry for any teens in his district. Because Mr. McCance is telling them, if they are gay (or maybe any number of things that he doesn't like) they should kill themselves.

As far as I'm concerned, Mr. McCance is a failure and travesty to his position. I have half a mind to write to him and his board to tell them that. He should be made to step down. Just because he's elected, doesn't mean he should get to keep that position. After all, how long before he doesn't like "retards" and thinks our special needs kids should kill themselves? Please note the quotation marks as I don't agree with that word myself but it's what bigots like to use.

I feel this way for any person in our education system who does things like this, hurts our kids or their education, or shows their true colors to violate that trust at all. I don't care what state they are in. Our children are in school for an education on academics, not to learn how to end their lives because they don't measure up to some jerks expectations. Not to learn how to be bigots either. It's lack of acceptance in our over populated world that is just one more thing destroying us.

There are greater problems in our world than racial, ethnic, religious belief, or sexual preference. Seriously, maybe we should finally start working on things that need the attention. Our school system sure needs it and Mr. McCance is a shining example. How about housing and employment? How about war and our economy? How about a screwed up political system? How about crime? You know, rape, gangs, drugs, and weapons? Wow, wasn't hard for me to come up with a list was it?

Advocating suicide is wrong, I don't care why. And these were kids, that makes is all the more heinous. Take a stand.

Monday, October 18, 2010

Dr. Nick Dubin arrested

In recent news I have learned of something that has shocked and dismayed me. I am very disappointed in this news as this is a person who's work I have supported. Dr. Nick Dubin, an advocate in support of learning about autism, who lives with Asperger's Syndrome himself, was arrested. Federal agents stormed his home and seized his computer. In his arrest he reportedly admitted to downloading child pornography for as much as the last two years. He also stated that he knew such downloading was illegal.

I have seen speculation that perhaps he was doing this in study of some form of bullying. Unfortunately, illegal is illegal, no matter your intentions. There are legal task forces assigned to such things and they are the only ones allowed to "download" content and specifically for purpose of catching the criminals who make the sickening stuff. No matter what Dr. Dubin's intention was, he's caught with illegal downloading.

Dr. Dubin has written several books on living with the difficulties of Asperger's syndrome and high functioning autism. He's taken on bullying in at least two books that I know of. He's been a public speaker across the country. I've spoken with him over the internet, though never met him in person. Even so, in seeing all the work he has done, this greatly disappoints me. I await the legal proceedings, but the very idea is just too gut wrenching.

Even so, I want to make a suggestion. I suggest that we try to take something from this that is still good information and that is the work that he has done. Even though, he faces charges for a vile offense, his work on autism, writings and educational material do not change in how correct they are. All of the information he compiled is still correct and good information. It should still be utilized. He has made good suggestions for bullying programs and compiled information on autism that can help you better understand people on the spectrum.

And please, his act is not to be contributed to being autistic. People with autism are not any more guaranteed to be deviant, perverted, or psychotic than anyone else. That is not autism, rather a different illness all it's own. And calling it an illness is not to excuse it. No, Dr. Dubin must face the law just like anyone else.

For those who know me closely, they know that I carry heavy disdain for anything pedophilia related in any way. Disdain? Try blood red hatred, that fits better. So maybe that helps to show just how disappointed I really am in Nick as a person right now. I'm not sure what spurred these choices, but it's really hard from my point of view to excuse them. And, while I wouldn't want to know this for most people; why, Nick? Why did you have to do something like this? Why did this have to be you?

Wednesday, October 13, 2010

Learning from mistakes versus shame

My son made a couple of choice recently that he deeply regretted. I won't go into the details of them here and now. I would rather present the lesson they have brought us to.

In both of these situations his decision did get him scolded and corrected. They were serious decisions and did affect others around him. Recently he's taken to being hard on himself at various times of self frustration. He refers to himself in a harmful manner and degrades himself angrily. This has brought about an intervention of lesson that is very important for him. It told me he needs my support and if your child on the spectrum does this, they need your support too.

The lesson here and correction for this, is that it's more important to learn from our decisions and mistakes than to feel shame for them or beat ourselves up over them. No one wants us to hurt ourselves in any fashion. They prefer we learn something, make changes and move on. This is not such an easy thing for an autistic person to do in the first place. But if we apply early support to our children in this lesson, could it become easier for them? I sure hope so.

So I've told my son that I don't want him to call himself names or be ashamed (yes he used the word 'ashamed'). I want him to learn from his mistakes. His teachers want him to learn from them too. I've told him that I would never want him to feel shame or dislike himself over anything. We all make mistakes, sometimes they are embarrassing or silly, but mistakes all the same. We have to learn something from them so we don't make those mistakes again.

Next I asked him what he learned from this decision and talked with him about ways to avoid making that mistake in the future. In both cases it was about making a different decision, one that would keep him out of trouble. So long as he does that, there is no reason for him to worry any more.

But the rest of the lesson and intervention continues. It seems that this is a phase that must be dealt with. It requires correction and teaching so that he doesn't develop a habit of hurting himself as a mode of self punishment. No one deserves that and it's easy to fall into.

Friday, October 8, 2010

Anatomy of a schoolyard bully

Anatomy of a bully, what kinds are there? Does it make it any difference in how you deal with a bully to know where they're coming from? Maybe so. Nothing can change the fact that bullying is wrong and cruel. Nothing can change the fact that schools need to have a proactive stance on bullying. I think it's worth a look however, to try and see why the bully is partaking in his or her behavior. What's causing them to act out? To me, it seems that there are five types of schoolyard bully and these are totally my own definitions. Feel free to add your own views in comments.

The Angry Victim: This child is angry and hurt from some other issues that the school may not know about. He or she is taking their anger and pain out on others. They may be victims of bullying from larger kids, siblings or abusive parents. What ever the case, they need intervention and help.

Cruel: This is a child who has learned or been inspired somehow to be mean because they consider it "fun". This is the worst type of bully and should be looked at closely for possibilities of serious mental disorders.

Authoritarian: This child thinks they are somehow an authority or need to be the Sheriff of the school yard. They may be somewhat athletic and study in martial arts. They excuse their bullying by claiming they are "teaching someone a lesson". The sources from this could stem from any of the other bully types, but it makes them more dangerous because they truly think they're bullying is "justified" and they have the authority to do what they are doing. Could be a classic narcissistic trait. Leaders in college hazing fall in this category because they think that pledges must suffer to join the fraternity.

Discriminator: This is a bully more likely to commit hate crimes over race, religion, sexual preferences, or just being different. They commit their bullying because they think their target is somehow a lesser being and doesn't belong. This can go strongly in hand with Authoritarian and may often be combined.

Follower: This person is a bully by default and association more than anything. They may not even want to be a bully, but they are too afraid of the lead bully to do anything about it. They go along with bullying to avoid being the next victim.

We already know what happens to victims of bullying. They suffer loss of self esteem, post traumatic stress, and rise to risk of social outcast, drug abuse, and suicide. But what about the bully who is allowed to carry on without intervention?

Bullies who grow up learning that they can get away with the behavior risk falling into criminal lifestyles. They learn that violence or abusive behavior is acceptable and that only grows the longer it continues. Of all the bullies, the one who grows up to be the most dangerous is the Angry Victim. Since they are a combination of bully and victim they grow to be jaded and resentful. They carry all the risks of the victim with the possibility of being the one to explode and take others with them. Even their own families.

Next to this is the Cruel bully who does it for fun or entertainment. They will be abusive to their loved ones and use people for personal gain. It's been considered that several serial killers may fall into a category like this or the Angry Victim. Both could fall into criminal lifestyles easily with gangs or worse.

So, when it comes to preventing or taking any action against bullying, it's helpful to remember that both sides will hurt in the long run if nothing is done. Bullying hurts everyone and leads to broken lives on both sides. Knowing the source of a bully's behavior may help to intervene and correct. Again, there is no excuse for bullying, but the more ways we can find to combat it, the better.

Tuesday, October 5, 2010

Stress and sensory overload

What triggers sensory overloads and rage reactions in autistics? Why is stress so hard to handle?

Many people with autism may find excess stress or negative stress in general difficult or triggering to them simply because of the natural effect stress has on our bodies.

Stress triggers a release of adrenaline naturally as a defense mechanism. Adrenaline amplifies sensory input or intake. Consider that people with autism already have senses that may be "turned up" or "amplified". They already have a natural level of difficulty with sensory issues. Add adrenaline and magnify that. The result is sensory overload which can trigger several forms of behavior response.

Not everyone is triggered the same way or as easily as one another. But something found to be unpleasant, such as a sound or texture, will only become more unpleasant as it continues because of the natural stress reaction.

It all depends on what our sensitivities are and how they affect us. It also depends on how much we've had to practice with that sensitivity to live with it. Some sensitivities can be lessened by dealing with them enough to raise resistance. Not all can be handled what way either depending on the level of sensitivity. My sensitivity to squeaking balloons is a good example. I can't tolerate it, it's painful. I've actually had a squeal happen near me at a high enough pitch that it made me cry out. Others, stared at me strangely. Fortunately, the sound was short lived. I still had to retreat and give myself some sensory deprivation while the adrenaline effect wore off.

Just having a single sensitivity to something doesn't make you autistic either. It's an extreme of sensory issues across the board. Some are too high, others are too low, and those not affected could be drowned out by those that are over loading.

Our brains naturally process everything we take in around us. They do so with a series of what I like to call "breakers" that allow us to sort the sensory input. These breakers allow you to ignore input that isn't important, like the ticking of a clock when you're trying to talk to someone. In sensory overload and sometimes without, that ticking can be too loud for us to ignore and we will struggle with it and every other sound in the room in order to concentrate on your voice.

The stress reaction is also physically exhausting. It's like your very senses have had a seizure and they leave you drained from your body fighting to compensate.

It's best to have an escape route or allow an escape route for calming measures. Patience is also a serious virtue. Autistics should not be pressured or rushed. Berating and yelling will only make things worse. Even still, those of us with autism should do our best (if we are high functioning enough) to know our own conditions and how they affect us. Knowledge is truly power.

Monday, September 27, 2010

The effects of restraint

As I've been writing my support blogs, I've found some areas get repeated. Those are often worth repeating and additional insight. They're worth keeping up front in our minds as reminders of their importance. Kind of like bullying or Halloween safety. Today it's about the use of restraint in meltdowns or other behavior.

First, I want to remind everyone that the proper use of restraint is more than just how a child is held or how restraint is used safely. It's also about when restraint even should be used. Restraint is a last resort only for physical protection of the child and others around him or her. The importance of this cannot be emphasized enough. The first line of defense or action should always, always, always be verbal. That's not taking extremes into account, but may prevent extremes from becoming the norm in a child.

Behaviors that do NOT require restraint would include; breaking a pencil, ripping a piece of paper, stomping feet or being verbally defiant. For that matter general defiance should never be responded to with restraint. Restraint must never become a disciplinary tool. That defeats it's purpose, which is only to protect.

Behaviors that should involve restraint are; head hitting, attempting to stab self or others with a pencil, flailing fits that could harm others or the child, violence that is a direct and fully recognizable threat. Not just tossing a book across the room either.

A singular act of defiance, like throwing a book or pencil, is not an action where restraint is required. If they start throwing everything, which makes it a repetitive action that doesn't stop with verbal or softer approach, that could be a restraint worthy situation.

I want to touch base on an important effect of restraint and it's a significant drawback, even to proper use. One effect I've found in research and reading is that restraint always makes the situation worse before it gets better. Why is that? I think you will find that most of our children on the spectrum are very sensitive to their personal space and anything that touches them. Things that touch or invade space without consent or by surprise can get some interesting and negative reactions. The action of being restrained, not only invades personal space, but adds to already overloaded sensory issues.

This isn't to say, "don't ever restrain", rather to keep this effect in mind if you are going to apply restraint to a situation. The child in the situation will feel worse and act out more before they calm down. That is a natural reaction to such intense sensory trauma. Yes, I said "trauma". Too much restraint, or misuse of restraint can be severely traumatizing. Sensory overload is already like that by itself. Sensory overload and stress overload are like your senses having a seizure event. Have you ever known anyone to have a non-traumatic seizure?

Because of this, the after effect is generally an exhausted person or child. It takes a lot out of you to have your body whip into high gear and hold like that for any amount to time, especially several minutes to as long as 45 minutes. Just 3-5 minutes feels like an eternity. I haven't seen a child go through a 45 minute meltdown, but I've heard of it. I can only imagine that child being out of action for the rest of the day.

So restraint, at first, will momentarily increase all effects of what the child is suffering that makes restraint necessary in the first place.

Now consider what it's like to anticipate being restrained. How would you feel, if you went into class with the conscious thought that you may be held down on the floor today? How would you feel if that was your thought every day? How would you fare if you already had an emotional disorder and that was stressing you out every day? That can be the effect of improper restraint and restraint used as a punishment. That added stress, makes it more difficult for a child to "behave" than without. That child already has a stressor in place that they cannot control and pushes them towards their personal limits of daily stress. This is more than simply learning to behave because of consequences of our actions. This is in excess of anything normal.

When my son throws a toy, I take it away. That's a natural consequence. I do not pin him to the floor. That would not be a natural consequence. Not anywhere in life.

My son has, years ago, had fits where he would bite himself or head bang. In those instances, where verbal failed to redirect him, I did scoop him up and hold him to stop it. He would escalate because that was the natural body reaction, but then, in time, calm down. I still remember the time around being 3 when he looked up at me and wanted to know why he couldn't stop. He recognized there was a problem, even at 3. Kids know and remember. We would do well to remember that ourselves.

Wednesday, September 22, 2010

Dealing with frustration and emotions

Emotions can be intense issues for those on the spectrum. Just because we don't always show emotions doesn't mean we don't have to cope with them. High stress emotions are the hardest, especially if dealing with breaks in routine or unexpected events.

Frustrations need early coaching and support work. Learning how to stop and take a few deep breaths and think about our next actions can be a challenge.

For example, a child is playing with toys but time for the school bus is coming up in fifteen minutes. Even forewarning can trigger a negative response. When that happens with my son, what ever he throws a fit over gets put away immediately. With some things, if he's cooperative, it can stay out until he gets home from school. He knows this and most days it works well with him.

Mostly the trigger is that change in events and interruption to what he's currently doing. It means switching tracks and that takes daily practice. I have been known to interrupt what he's doing in checking on him, just to give him that practice. It's going to happen a lot in life, especially at school or later in life in jobs and social interaction.

Recognizing when an emotion is overpowering is important too. It's okay to take a break and remove yourself from a situation when feeling overwhelmed. I employ this practice with my son as well. Signs that he is overwhelmed and needs a break are things like swinging his fist, hitting furniture, throwing a toy, shrieking, or clawing/biting himself.

I discuss with him that when he feels the impulse to do these things is when to take a break or stop and take a few deep breaths before doing anything else. He knows that it's not okay to hurt himself and that throwing things or swinging his fist could hurt someone else. Even so, this takes lots and lots of practice. There is no fast fix for these feelings or behaviors. Even with medications, my son still needs this practice. It is the coming years and crucial areas of school like Jr High, that I hope for this practice to pay off. Other support areas will be less for him at that time. So it's important to have behavioral practices in now.

Monday, September 20, 2010

Picture day

Well, today is picture day at school. What that means for us is dressing up and looking nice, but that's not all. It means extra care in our morning routine to make him presentable.

As it is, I don't even brush his hair until minutes before we walk out for the bus. That's because it has a better chance of staying that way. If I brush it early, he rubs his head on the floor or wraps in a blanket for play time and it's completely undone.

Then there's coaching that needs to be done before he goes. I tell him exactly what will be expected and that he needs to be cooperative for pictures and the photographer. Fortunately, he loves having his picture taken in general. So hopefully that means he will be eager when the time comes.

He didn't want to put on his nice clothes today, at first. He usually picks his clothes is why and that changed routine for him. He likes having his choice of clothes. Breakfast isn't usually messy, but it's a risk. The biggest mess risk is taking his vitamins.

He doesn't like to chew his vitamins without a mouthful of milk. That creates mess possibilities galore. I try to get him to just chew and swallow but there must be a texture issue with the gummi vitamins. Yes, we have tried all sorts of vitamins and he doesn't like the texture of any of them. These are the only ones I can get him to take at all. And he needs them because his little body is hyperactive in more than just behavior. It goes through sustenance and vitamins just as fast.

But all that is done now for this morning and he's not torn to shreds. His clothes aren't wadded and soon I'll help him brush his hair. Looks like we'll have a good picture day after all. Please feel free to leave comments about your morning challenges and share your own experiences.

Friday, September 17, 2010

Staying in the lines

One thing that seems to plague people with Asperger's (according to some reports and my own experiences) is handwriting. Handwriting involves use of coordination and spatial skills that we can have difficulties with. Currently we are working with my son on his issues.

When he writes his name on a piece of paper, he has trouble defining it inside the lines. It comes out large and multiple words wind up overlapping. He finds this frustrating as it's not intentional. It's a natural difficulty with his condition.

The only real cure is practice. Practice at slowing down to apply skills to paper. Occupational therapy can also help and he does work with an OT. He told me this morning that someone in class told him about lines in a way that's helping him. He couldn't explain past that, but we'll take what we can get.

My own handwriting is horrendous. What's funny is that I'm an artist and I like to draw fantasy creatures and super heroes. I can do a fair job if I put enough time into it. So what's the deal with my handwriting? I have to slow down. Even then, my hand has lost some of its steadiness in time. My drawings have suffered as well as my handwriting.

Some good ways to help your child include working with teachers and getting large print practice workbooks for home. Start with a single line and practice keeping it between two other lines. As he gets comfortable with this you can add lines or letters to practice with. Even so, our natural impulsiveness makes us want to go faster than what our hands can do.

Most importantly, it is controllable and correctable with time, patience and practice. That doesn't mean he will develop beautiful handwriting, but it can get better.

Sunday, September 12, 2010

How important is play?

As I said in my last two blog posts, playtime and games can be and are very good for social learning and development. But just how important is play? A local friend of mine who runs the Gameboard here in Sheboygan, has been collecting a great deal of data and shared it with me. I found these links very interesting and I'm sure you will too.

Carnegie Mellon University: (click the name) In 2007 they conducted a study of children playing games and the effect on their education. A quote from the abstract: Theoretical analyses of the development of numerical representations suggest that
playing linear number board games should enhance young children’s numerical knowledge. Consistent with this prediction, playing such a game for roughly one hour increased low-income preschoolers’ (mean age 5.4 years) proficiency on four diverse numerical tasks: numerical magnitude comparison, number line estimation, counting, and numeral identification. The gains remained nine weeks later. Classmates who played an identical game, except for the squares varying in color rather than number, did not improve on any measure. Also as predicted, home experience playing number board games correlated positively with numerical knowledge. Thus,
playing number board games with children from low-income backgrounds may increase their numerical knowledge at the outset of school.

They found that practicing number games did increase mathematical progress of the students.

The Board Game Studies Association: They devote themselves to the study of board games throughout the world. Check out their site by clicking on the name.

Games for Educators: Has helpful articles on the importance of games in the classroom and elsewhere. The site really speaks for itself with in depth information, game finders, and a forum. To really learn the impact of games and their importance, browse this site!

Dr. Stuart Brown: Tells us in the video on the link about how play affects psychology. A very interesting and informative video.

With respect to my friend, I still haven't gotten through all the information she gave me. But I wanted to get this out here because it's important and supportive information to the use of games. For great places to find games be sure to check out the blog I wrote just before this one!

Photo: My son and one of his cardboard cities. How do you think organized game play works for him?

Friday, September 10, 2010

Where to get great games

As a follow up to my last blog about games helping with social skills, I want to touch base on where to get some great games. I want to challenge you also, to expand your horizons and imagination.

To find games, it's true you can go to Walmart, Target or Shopko, but I want you to try another route. In doing this, you will find a selection of games not available at the giant department stores. You will find new games and well worth your time for about the same amount of money.

I want you to check out the local hobby game store. You can find them in your area in the yellow pages under "collectibles", "games" or even "toys" or "comics". In my area there is a store called The Gameboard that sells a wide array of board games to include many educational types.

These are the small business shops and family owned places that you might not know are there. Maybe you've seen them and always meant to check them out? Well, I'm telling you, you should. As I said above, they have access to games the other places done. Educational and imaginative ways of play you haven't considered. Let me give you the names of just a few of these games:

Flip 4 by Mindware games combines strategy and math in an easy to learn format. Click on Mindware for the website.

Yamslam by Blue Orange Games is a dice strategy game with chips, check out the site!

Amuse Amaze by HL Games is a spelling word game that takes you through, yes, a maze. Check it out.

Word on the Street by Out of the Box games (who also makes Apples to Apples) is a word game that you can kind of play tug of war with (verbally).

Zooloretto by Rio Grande Games is about building a zoo and attracting the most visitors.

7 Ate 9 by Out of the Box Games is a card game of math skill.

Other companies to look up are Days of Wonder, Educational Insight, Playroom Entertainment, and Game Wright.

Don't have a hobby store near you? You can order online too. Check out fairs and conventions. Don't limit yourself. And yes, I am saying to support your local hobby and game store.

In my next posting I will be talking about just how important play is to our kids. You won't want to miss it.

Thursday, September 9, 2010

Social gaming builds social skills

As an avid gamer with a vast personal library, I know the benefits of playing games with friends. Social games help to build social interaction skills in our kids. As you can probably tell, that could be very helpful for our kids on the autism spectrum.

Autism carries a delay in development of social skills that can become permanent impairments if not supported early. Some impairments will always be there, but many can be learned around with practice in social skills. One fun way to practice? You guessed it, social games.

Card games, board games, any that cause you to be face to face, interacting with another human being have great social value. They require interaction to play and stimulate conversation. There is a wide variety of great games out there for all ages. Varieties allow you to find game types that work best for your child. Educational games can be pointed out or suggested by your child's teacher or counselor if you need input.

I'm going to suggest one in particular that my son and I collect together. It gives us great Father/son time as we compare pieces that we collect and build teams and armies to pit against each other in competition. The game is called Heroclix. It's a tabletop game played on a map with small figurines of comic book characters. Surely you've heard of Superman, Batman, Spiderman, and the X-men? At least from the movies, no doubt. Figures come in booster packs with five randomly assorted pieces in each. It's always a surprise what you will get and rare figures have value. A booster pack isn't cheap though at around 11 dollars each. The benefits of this game other than a fun time? Sportsmanship, map reading skills, math, and strategy all go hand in hand with the social skills and communication skills that you use in play. Playing Heroclix in 2nd grade really boosted my son's math skills. Now he plays mock battles between good guys and bad guys on his own, rolling dice and adding numbers, comparing numbers, etc. No scratch paper. It's all mental math at two digit numbers that I've never seen go higher than 26 in standard play. You can buy Heroclix online or at local hobby and game stores. Many comic book shops carry it too.

Other great games include Ticket to Ride (building railways in the historic 1800s), Apples to Apples (word game), and there's always the classics like Scrabble, Boggle, Sorry, and Yahtzee. Sorry is a great game for teaching good sportsmanship. You have to learn to accept that the game sends you back to start a lot. How to accept losing and winning gracefully with good manners; all great social skills and important for growing up.

Involve your child in social games. Start a game night or gaming club with school friends or family (or both!). Definitely check out Heroclix (yeah I'm biased). I think there should be more Heroclix players, what can I say?

(Photo is of a custom figure I made combining Superman with the Silver Surfer- not available in booster packs)

Tuesday, September 7, 2010

Risks of advocacy

My purpose in advocacy is to inform and assist families and people in finding helpful information. I want the general public to simply know and understand more about autism. In doing this, I discovered those who victimize people on the spectrum and their families. I decided that people need to be informed on them as well. Even in that, you have to be careful who you get involved with. Especially who you get involved with on the internet. You have to be careful who you trust. And sharing information on people who may rip you off will make you some enemies. Those people don't like being exposed.

Seeing the depths that such people will go to when they claim to be advocates themselves, has been a real learning experience for me. It's shown me where I need to have a thicker skin to shrug them off. When you are autistic yourself, that's not always so easy. You can get hung up on the injustice of it all and it can get under your skin. But it really is amazing what these people will spend their time on when they could be educating on autism themselves. So this blog is dedicated to all of those advocates who struggle to do the right thing in spite of these behaviors from haters. Also to those of you who want to be an advocate.

Because some people take being an advocate and turn it into the chasing of the spotlight. They think it's supposed to be how they become famous and anyone else who gets any attention besides them is an enemy. It may be anything from jealousy to serious mental illness that drives them. They will go out of their way, spend months of time and even money to do low and terrible things. In short, they resort to internet bullying. At that point, they are not advocates any more and stand for nothing good what so ever. They only care about themselves. Some are full of audacity and false authority at the same time and will try to make you answer to them as if they are some special court. That's different from simply informing on your personal experiences or someone asking for your money and the things they are doing recently (compared to umpteen years ago).

I've already talked about these people in my blogs and anyone who has been following my writing knows the details in and out. My point is that, if you want to be an advocate, you may face people like this and there's more than what I've even posted.

You may, for example, stand up for someone and their rights. You may be supportive to that person and even a friend. That person may turn out to be one of the fame seekers who will turn on you and stab you in the back. When you see those true colors emerge, the best thing you can do is walk away. And that won't feel good. And sometimes, that won't be enough to stop that person. They may go to lengths of posting comments about you under pseudo identities all over the internet. They may follow your blogs and stalk on them just as badly as the pseudo authoritarian.

The reality is that they feel you somehow threaten their success. They want you to fail. What you need to understand and keep in mind about them is this: They are the ones who will ultimately fail. They are on a course of self destruction. You have to keep that in mind and not let that stop you from helping someone else. Don't let them push you down for any reason. Your work will show what you are really about to anyone with any cognitive thinking ability. The same goes for your reasons for doing that work. It will show for anyone who wants to give you a fair chance to be known.

Another risk is the people you defend and their enemies. People who are discriminating or attacking someone you are trying to help, will turn on you as well. It comes with the territory. You must keep in mind that these people have a mob/pack mentality and will act like animals of the same. You cannot educate them and they often have their own agendas. Some, because they think they are better than everyone else when they're just a bunch of dangerous fanatics. They will resort to stalking just like the others and other immature and sometimes frightening behavior.

They will twist your words and post partial quotes from you in manners that completely alter your context. They will post web pages dedicated to you with inappropriate photos, slurs, slander, libel and any other insulting insinuations they can invent. Some of the really sly ones will skirt just short of the laws that would have them prosecuted. Why? Because their true intent is to do harm. Anyone who gets in their way is a target for their rage. They're selfish and psychologically imbalanced. Be prepared.

Now, remember this: Words on a screen, photos posted on a website, insinuations and insults, cannot kill you. They are stressful and they are wrong, but you can brush them off. I have recently had to learn this the hard way myself. You can seek legal action, but under most circumstances, it will be very expensive. You have to balance what it is really worth to you and what that person can really do to you. Even if they take something deep in your past and splatter it like fecal matter all over the internet, calling you a criminal and trying to make it look like you're a total low life, it can only hurt you with people who aren't fair enough to look at the whole situation or the person you are today. There are points where you can report them to the authorities and there are laws regarding misuse of public information that you can report as well. Past that, you have to carry on and not let them stop you.

For example, many of you know that I have a group of stalkers following along and reading my blog. They will read this posting too. They take snippets of what I say and post them with insinuations, accusations and exaggerations for no other purpose than to try and hurt me. They want me to look bad. They want to do damage. But, thanks to the overwhelming number of supportive messages I have received, I have learned something. A few things actually:

1: They cannot hurt me. All they have shown the power to do is alter the light and image of things to try and make them look like something more than what they are, or blatantly what they are not. At this point, the more they do this, the worse they look themselves.

2: They cannot STOP me. Nope. I'll click publish post on this blog and it'll post just like the rest and I'll do the same for the next one and the next one. I have a long history of helping others and will continue to do so no matter what they do. And, as stated above, my work will stand on it's own.

3: They're helping me. Surprised? Consider this: my stalkers continuously post my name in taglines and the subject matter of their blogs. Any reasonable person who reads their work about me is likely to come and look because they simply want to see for themselves. I know this, because people actually found me by googling my name after reading that work. Those persons are some of who sent those supportive messages after reading what they found. So, in the end, I got free marketing out of it. Not that I'm seeking fame, my purpose is stated way above, but even negative publicity is still publicity. So, the more my name is posted, the more it can actually be found. The more my name is posted, the larger my internet presence becomes. And that's despite the negative intentions.

So, if you are considering becoming and advocate, take all these things into consideration. And please, become an advocate for the right reason. Helping others is what it's about.

Thursday, September 2, 2010

Advocates Against Fraud in Advocacy

I'm writing this because I want you to know about AAFA and my position with them. I like to be clear and provide information where I can for all who may just want to know.

First of all, what is AAFA? Well, you can see the website and explanation HERE.

If you read the explanation on the page, it's pretty straightforward. The idea is to try to help protect families from being taken advantage of. Families desperate to help their kids get scammed by people claiming to be advocates. It's a devastating blow to an already bleak situation. The family winds up losing money and they have nothing to show for it except financial damages on top of the situation with their child or family member in need of support. Our goal is to create a place you can go to, to ask about that advocate and have extra eyes and thoughts on what you should do.

At this point, it's important to point out that (while I have law enforcement background), we are NOT law enforcement. We are not going to arrest or convict anyone. If we see that a crime may be in process, we report to the proper authorities, just like anyone should.

I have seen some questions come up about AAFA and I'd like to answer them here.

Are we qualified?: All of us have background and ability in researching. The important thing to know here is that the information we research is already public information. Anyone can look it up, but most don't know how. There are no legal qualifications, diplomas or licenses required to look up public information. We do what anyone should do before giving money to anyone. Best of all, we don't charge any fees.

Who do we go after?: First of all, that's not a very good term. We investigate and research. We don't just do that on anyone who comes along. The idea is that you can come to us with questions about an advocate who's asking you for money and we can research that advocate. We don't "go after" people because we "don't like them". We do research because of concerns brought to us by people like you. Then we report on what we find and all of what we find. That way you can see everything in the exact context we find it in.

What do we look for?: News reports, wild claims that turn out to be false, public accessed legal documentation. We basically look to see that the person is who and what they claim they are. We look for up to date and current information that will help you decide if you should give this person your hard earned money. Examples:

-Current criminal history: if the person just got out of prison last week from embezzlement charges or currently faces charges, you should know it.

-Claims of Grandeur: To inspire confidence some may make brash claims about themselves that aren't true. Some can be verified easily (and when they can't it's a red flag). Such as claiming to be an official NASCAR race car driver or DC Lobbyist. DC Lobbyists are all registered on a public access list. We had someone make this claim but couldn't be found on ANY list.

-Multiple Reports of Concern: How many people come forward on their experiences is important to note. If 10s to 20s to even 100s of people are saying they've been scammed by this person, you shouldn't give them your money.

-And how does this person react to us?: If they react by stalking and smearing measures, it says we're on the right track. We'll report on those as well. We've had some of these measures include attacking our religious beliefs, disability status, or education. We've even had web pages dedicated to us in obscene fashion. Does attacking any of that sound like an advocate to you?

In the past I've reported on my personal experiences with people who call themselves everything from and advocate to an organization. Because these people openly ask for donations or fees, reporting on them and experiences with them is little different than sharing experiences with any business. You know, like writing a business review. Let's say you're looking for a mechanic to fix your car. In looking around, you find one but you're pretty savvy and look for reviews. You find out that he's been in the news for being sued a few times and has lots of complaints against his work. Are you going to him? I doubt it. And everyone who had the experience has every right to report on it. Now, if he starts stalking people who report on him and putting up posters about their personal lives (maybe stuff he dug up from 30 years ago in someone's grade school), AND tries to say that's the same thing as done with him... what do you think of him then? Yes, that means there are risks, but we take them, so you don't have to.

We are very open to questions about what we do and we certainly don't think of ourselves as higher or better than anyone else. We simply want to help protect families from scams and false advocacy. If you have any concerns or would like our help, contact us through the website at the link above.

And what's my position? I'm an adviser on the board for AAFA. I do help in the researching and some decision making processes.

You can see another blog from board member, Amy Caraballo HERE.

Wednesday, September 1, 2010

My law enforcement background

Questions have been posed about my status having been a law enforcement officer with Animal Control. Some are questions of folks who just want to know for specifications and others are people who disregard the enforcement of "dog catcher law" as something less than notable. Well, here are the specifics for all who wonder or want to know.

First of all, these laws are not enforced in the same uniform manner across the country. Enforcement of these laws is still very much in a developing and pioneering stage. In Lincoln, Nebraska it is enforced by what the City and County Attorney's office recognizes as "law enforcement".

In a city of around 250,000 people there are a lot of animal issues. Too many for the police department to deal with alone. So they have Animal Control, a division of the Health Department. It should be noted that in most places Animal Control is part of the local animal shelter.

We enforced city ordinances (laws) regarding to animals and that is far more than just someones dog running loose down the block. Animal cruelty, hoarding, maulings and bites, and illegal animals were all part of the equation. For violations we wrote court citations (tickets) from the exact same ticket books the police department used. So when I say I was "law enforcement" I was, by legal definition of the place I worked.

Those who sneer at the field of Animal Control are generally undereducated on just what goes into doing that kind of work. The field is sadly disrespected and in need of public education. But when they are needed you can bet people are up in arms.

Some who don't like it just don't want to be bothered about their lack of containment on their dog. It's a different story though when we weren't in the neighborhood to catch their dog before the car hit it. Or they don't think we're useful until another stray mauls their child. Law enforcement has to be encompassing, it can't pick and choose.

And I wrote tickets for everything from license and rabies shot violations to cruelty. Cruelty is considered a felony in Nebraska and I even worked the hoarding case that helped make that consideration become law.

As always, open to questions.

Tuesday, August 31, 2010

Great Advocates: Autism Women's Network

If you hadn't heard of them yet and you are a woman with autism, you should check them out. The Autism Women's Network is there to provide support and information specifically for women on the spectrum of all ages. Just click on their name above to go to their website.

The AWN has notable successes that make them worthwhile. Their Executive Director, Sharon da Vanport is a radio host, consultant and speaker. Recently (July 2010) she even traveled all the way to the White House for the ADA Anniversary. Not everyone gets to do that, and she was specifically invited. Sharon has Asperger's Syndrome.

Another of their board is Tricia Kenney. She's a talk radio producer/host and a Missouri Director and Advocacy Coordinator. She's also part of Partners in Policy Making, a Missouri Classroom program.

Another notable contributor who has done a great deal of education on autism is Amy Caraballo, a writer for who has also worked with a wide array of organizations. Those include Autismlink and the Autism Self Advocacy Network.

You can find all three ladies' information in the Directors/Board section of the website. And while they are particularly there for support of women on the spectrum (and Moms too), they welcome supporters of all kinds.

So, give their radio show a listen (see website) and their site a look. If you are a woman with autism or a Mom feeling lost, the Autism Women's Network can help you. And I couldn't think of a better way to celebrate my 120th post.

Monday, August 30, 2010

Bullying in the 2010/11 school year

With every new school year it bears notice that bullying must be acted upon and prevented. Kids will tease each other. To a point that is natural, but should not go unchecked in teaching them how to respect each other.

Children who are chronically bullied are at high risk for social and psychological problems. My area in general, has very good anti-bullying programs. Unfortunately, I still read stories and hear from parents around the country and globe, that their area is in need.

You can do something about it. Talk to your school about an anti bullying campaign or activities. Talk to your school PTA because they can be valuable allies in corresponding with school and enacting those activities. Educate on what students can do when they see someone being bullied. Have kids make posters or have an anti-bullying day. If there's a school fair, see about setting up and anti-bully activity booth of some kind.

Kids have to be taught that it's not right to hurt others for entertainment. People's differences should be respected and not pointed out for laughter. So lets look at the new school year with determination. If your child comes to you about being bullied, take it seriously and talk to the school. Get involved to stop bullying.

Saturday, August 28, 2010

Disabled Advocates, Unworthy?

I've been thinking about somethings that have been said about advocates who are disabled recently. Comments that suggest an advocate isn't worthy of being called an advocate if they are on disability such as SSD.

First let me address this myth: SSD is NOT welfare. Social Security Disability is based on what you pay into it through out your working life. That's right, in order to have SSD in the first place, you have to have WORKED in your life. You have to have held actual JOBS. I didn't get to be on SSD because I whizzed my life away. I got hurt. It happens to lots of good people.

Now there was a comment about people on SSD not being allowed to use their funds for donations or luxuries. Well, first, they don't give you enough money in the month to live in any kind of "luxury" or to afford "luxuries" as most people would see them. So that's counterproductive right there. It just doesn't happen. If I could live in luxury, I wouldn't be on SSD. How much do luxuries cost? What kind of luxuries are we talking about? Should people on SSD just live as hermits and never go out of the house? Should they be grounded in life from going to the county fair or movies? See? Ridiculous.

As for making donations to causes, they have every much the right to make a five dollar donation to a cause as anyone. And if the SSD funds is really that much of a sore spot, consider this: People on SSD are actually allowed to hold a JOB! Yep, there is a limitation of hours and pay amount before we start losing benefits, but it is allowed for us to work. That means we are allowed to make some of our own money we can do what we please with.

Now let's get to the idea, from a quote I saw, that suggested that disabled people are not worthy of being advocates. Well why not? Let me give you a special word for this attitude; DISCRIMINATION. And just what should disabled people do? Sit at home and give up on life? Stare out the window in depression? Or would it be better if they actually do something? And who knows what we live with more than us? Who better to stand up for my rights than me? Who better to stand up for your rights than you?

I'm doing something, with my time and my life. I'm trying to better myself in spite of my disabilities. I should think that's commendable, not the other way around. Of course I know why this comment was made at me, it's because I decided people should be informed on a situation, but that's not what this blog is about. It's specifically about the idea that being disabled makes you unworthy of being an advocate.

And, if the person who says that claims to be an advocate, are they still and advocate? NO. But this person was hidden behind would could have been a false name, so I don't know who they are. But the comments were on another blog that claims to advocate (words will get switched there so I use the term loosely).

So, to recap, because I'm on SSD, I shouldn't write my blogs and educate on living with autism. I shouldn't stand up for others. I shouldn't help families find resources like I have. I shouldn't give any advice on anything. For that matter, I shouldn't spend money on a cup of coffee. I shouldn't have any entertainment in my life either. I should just sit in a room and stare at the walls. I'm being sarcastic, but you get the idea. That's discriminatory and I won't stand for it. Neither should you. Keep living people! Disability is not the end.

Friday, August 27, 2010

Autism and Loss of Identity

This is from personal experience. I cannot speak for everyone, but since it happened to me, it's reasonable to think it happens to others.

People with autism are typically very sensitive and can be very fragile. Certain sudden changes in life or environment can be very traumatic. They can result in psychological damage and be very hard to come back from or heal through. Very hard to "let go" of. Damages include PTSD (post traumatic stress disorder), depression and even loss of identity.

Loss of identity is a loss of self and self definition. When I was forced to walk away from a career I loved, it tore away an integral part of me. That career, for all purposes, was "me". Worse, it was a discrimination case, and before I left I was hounded, harassed, degraded, and devalued. My work was made worthless. Imagine having to make a dramatic choice. You can have your hand cut off, or have it beaten to a pulp with a meat tenderizer and then cut off. Your legal rights say you don't have to make that choice. But if you don't, the choice will be made for you. You have no power. That is what it feels like.

And this happens to people all the time, I recognize that. I happens to neurotypical people who've worked their jobs for 20 plus years. That can cause loss of identity too. The point I want you to know is that for someone with autism who depends on things in their life being so controlled and predictable, it's much easier to cross that threshold. It may not take something a neurotypical person would consider life altering at all. That's because perspectives and perceptions are different.

So how did my autism have that affect for my loss of identity? As you may know, autistics often have a special interest that they get engrossed in and stuck on. They may develop this into a special skill. I was tested at a Vocational Rehabilitation office for my work attributes. I've mentioned this before. Anyhow, I made exceptional scores in writing/journalism and protection/law enforcement.

These were already true interests of mine for years. I had worked for security companies and served with a Military Police Unit. I had always, since my youth, wanted to be a detective. When I became an Animal control officer, I actually achieved that to a degree. I investigated offenses involving animals. I was already a trivia nut on animals anyway. So it really was perfect for me. It was so much more than just my source of income.

When something is that much a part of someone, it's very traumatizing to rip it away. The same could be said for an autistic who's life is comic books. If they are that much a part of his life and he's that deeply involved, a fire burning them all could cause a loss of identity. What he knew that he related to himself is gone.

So I think that an autistic person may be at higher risk for such trauma and it may be necessary to understand that. Can we come back from it? Sure, depending on the person. But not everyone comes back at the same pace or to the same degree.

There are kids at risk right now in the school systems. The stories of those bullied even by their teachers. You've seen them in the newspapers. Psychological and sociological damage at that age can shape them forever. You may as well build them high up on a pedestal and then push them off. This is why there needs to be more education, awareness, and understanding. This is why I write.