The R-Word is not acceptable

Ok so, this isn’t new and I’m a little late on the bandwagon but there’s a reason. You, my readers, are already r-word savvy… you already know not to use it. You already know how hurtful it can be. So I’ve kind of felt like I’d be preaching to the choir if I did a post on it.

I changed my mind.

I still hear the word far too much

R-Word.org

I live in a bilingual city where a lot of people not only speak French but it’s actually their first language. English is second. There are some inherent problems with this that I have noticed. Nothing drastic but there are some things that bother me.

For example, the French here tend to use double negatives a LOT. It’s not their fault though. When you translate French into English, if you do it literally, you end up with a double negative most of the time. I’m not here for a linguistics lesson so just take my word for it.

However this also means that some “slang” and even derogatory words become a regular part of their vocabulary just as easily as it does for teens in high school that throw around the latest trendy verbiage or insults or what have you.

Let’s just say that when something doesn’t make sense to someone around here, the most likely reply I’ll hear is “that’s so retarded.”

Accepting the blame

First and foremost, we all must accept the blame before we can try to make a change for the better. I’ve said it. I’ve never said it as an insult or in a derogatory fashion but I’ve said it as a means to describe something I disagreed with or thought made no sense.

I think it’s safe to say that most people have at least used the word in some way even if not meant to hurt someone with it. Especially those of us that are over 20 or so…. I mean, how long ago was it that we first started hearing that “mentally handicapped” was taking over for “mentally retarded”?

We never meant for it to be a bad thing to say but here we are… it is how it is, it is what it is. Now it’s time to put a stop to it no matter how we intend it’s use.

Making the pledge

There is a website (http://r-word.org) where you can make a pledge to not only stop using the word but to make an attempt to stop others from using it as well. I have made the pledge on their site.

Their site lists a couple of dialog examples on how this subject can be addressed: Example 1 and Example 2.

By doing this, we can help people to recognize when and how they use this word and hopefully stop them doing so.

But I don’t use it to insult anyone

As I’ve said all through this, I have never used the word to insult anyone or in a derogatory way but I still feel that there’s really no reason to use it at all. No I’m not saying that I don’t want anyone else to ever use the word even if it’s with the best of intentions, I am just saying that I do not want to use it anymore.

I feel that it’s use only perpetuates it’s future usage… it’s continual transition from a medical term to a derogatory term to a slang to what ever else it may become. There’s just no need to continue to have it be a part of our vocabulary at this point as it serves no purpose except negativity.

The r-word is not acceptable. Pledge your support.

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Hearing, Listening, Pay Attention and Autism

How many of us have children that don’t listen? All of us. It’s the terrible twos and then the even worse threes that really test our limits. As they get older however, they learn to behave a little better but never do get perfect at it. What fun is listening to your parents all the time?

What I’ve found, however, is that there’s a whole other barrier when it comes to Autism, at least in the case of my son Cameron: focus.

Hearing – Lack of focus

Hearing is the ability to take in the sounds around oneself, or as the dictionary describes it: “The faculty of perceiving sounds.” In the case of many Autistics, there is a heightened ability to take in quite a lot of sounds all at once without the minds filtering system in place to muffle unimportant sounds into the background.

What this means is that it becomes very difficult to focus on one sound in particular in order to truly understand what it is. Or in the case of us parents and our children, they are unable to focus on what we’re saying in order to understand what we said.

Listening – Intent Focus

Listening as described by the dictionary: Give one’s attention to a sound: “sit and listen to the radio”. You can see how this relates to one’s focus. When a person focuses their attention on something, they listen intently. They absorb the sounds or what is being said and all else is dismissed.

Listening is the important portion of your instruction giving. Without it, there’s really no point in talking.

Paying Attention and Autism

When I read articles around the web about Autism, I find that they tend to discuss the lack of focus or the intent focus and very seldom do they discuss both. The truth is that for most children in general, far more to the extreme for those with Autism, you are almost always dealing with both.

I feel that one of the biggest hurdles facing those with Autism is focus. I like to think of Autistics as being digital while everyone else is analog.

Those with Autism have 0 and 1. On and off. Meaning that either all sounds are getting in and they hear it all but listen to nothing or they listen to one thing and hear nothing else. There’s not much room for anything else. This is why your child listening to a song, a toy, a tv show, etc will likely not hear you even though you’ve called their name several times. It’s also why your child will not listen to you in a crowd of talking people when you call their name. They likely can’t listen to you.

The rest of us are analog because our minds have the ability to scale the dial back and forth such that we can tune out the crowds to hear those that talk to us and conversely, can break our attention and stop listening when we hear something else of importance.

Conclusion

We all know that there’s a big difference between hearing us and listening to us… but what we might not know, or may sometimes forget, is that it’s not because they’re not paying attention. Or that they’re simply ignoring us (although sometimes that may actually be the case, crafty kids).

It is one of those things that can easily anger us because being ignored is a very frustrating thing but we have to remember that sometimes it’s not intentional. Sometimes it’s not their fault.

Be aware of your environment and that of your child as well. Perhaps they’re not hearing you, perhaps they’re listening to something so intently that they can’t hear you. Try not to get mad.

Instead, try to break their attention when so directly focused or try to direct their attention when there’s just so much going on that it’s hard to listen properly. Maybe take them away from the situation entirely in either case.

If they’re listening that intently, taking them away could result in a meltdown so it’s a judgment call on your part. But there are ways to change their focus without bothering them too much. Sometimes a hand on the shoulder will do.

Just remember the circumstances at work and the entire situation can be resolved much better without anyone getting mad and making a troubled situation much worse.

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A response to: “How to claim that that there is less autism in the World.”

This is the original “note” that was posted on Facebook, I included it here in case you don’t have a facebook account or any desire to go to it there.

1. Change the DSM criteria to include Aspergers and tell everyone that the reason autism numbers have exploded is because there are more people with Autism because we are now including Aspergers .The mild forms of autism.

2. Claim it’s genetic even though there are clearly clusters of autism in certain areas. Families were there who had autism explain that they are all related and therefore it’s genetic.

3. Never study identical twins with autism and look at differences.

4. Make up thousands of names of autism but don’t call it autism.

5. Make up reasons for autism. Mom is too old, too young, too fat, too thin, too cold.

6. If you go to vaccine court and claim autism as your vaccine injury, you will lose your case.

7. If you have autism in vaccine court you must never say autism, say encephalopathy instead and if you do say autism you will lose your settlement.

8. If you go to the doctor after a vaccine and say you were injured from it then there must be some other reason for the injury.

9. If the child dies after a vaccine injury make up another name like Suddenly your infant dies. SIDS>

10 If the parent was touching the child when they die from vaccine injury send them to jail.

11. If the parent is persistent that there was a vaccine injury make up a disease so that there is something wrong with the parent. Munchhausen By Proxy or Shaken Baby Syndrome. There must be something wrong with the parent.

12. Side Effects from Vaccine Injury are normal and therefore nothing to worry about.

13. Take a lot of money to study vaccines and autism and use it to buy a house.

14. Make up pandemics once a year and give vaccines that haven’t been tested.

15 If you still get the disease that the vaccine was suppose to protect you from tell them it’s a milder form.

16. Give multiple vaccines at once so that it’s impossible to tell which one was the problem.

17. Never study vaccines together in different combinations.

18. It’s never the doctors fault or the vaccine manufacturers under any circumstances.

19 Never teach doctors about vaccine side effects.

20 . Bribe the parents to get vaccinated.

21.Bribe the doctors to their patients vaccinated.

22. Bribe the schools to get the students vaccinated.

23. Compare vaccinated vs unvaccinated but give the unvaccinated the same amount of mercury.

24. Any doctor that looks at vaccinated children and finds any link whatsoever beat him up and ruin his credibility at all costs.

25. Tell everyone that the rates of autism went down by taking out cases of Aspergers that were added back in when the rates had increased.

I have no interest in adding this person as a friend simply to reply so I’ll reply here, maybe she’ll see it and ignore it just as she would on her profile.

My responses, point by point:

  1. Dr. Allen Frances, who was the head of the group that created the DSM-IV is the man responsible for adding Aspergers into the diagnostic criteria, after which, he said: “At that point I did an ‘oops,’ ” he says. “This is a complete misunderstanding. It was distressing. Quite distressing.” He inadvertently included a very large group of people into an already growing diagnosed group of disorders called Autism Spectrum Disorder. When you add a large group to an already large group, what happens?
  2. First, how does this add to the claim that there is less autism in the world? Second, autism is genetic. That doesn’t meant that there isn’t a sub group that is genetically predisposed to having their symptoms triggers or made more severe by environmental factors, such as toxins.
  3. Actually, they have studied twins that have autism. Read the results here. Hint, they found it’s genetic. Besides, if one twin has autism and the other does not yet they both had the same vaccines, what would you conclude?
  4. I don’t think they’ve made up any, but some of them have certainly come to light lately, especially with vaccine court cases. However, this claim is actually in reverse as many people were commonly diagnosed with disorders such as schizophrenia when they actually had autism. Many people were misdiagnosed with something else. Now that they are becoming more accurate, there is less schizophrenia and more diagnosed with autism. Meaning more, not less.
  5. First, how does this add to the claim that there is less autism in the world? Second, I will agree with you that most of these studies are just ridiculous at this point but I would think that it goes to show that there’s more autism, not less.
  6. First, how does this add to the claim that there is less autism in the world? Second, there’s a reason for that. You have to prove that the child has autism and that the vaccine specifically caused the autism. It has yet to be done.
  7. I’ll give you this one, but only as it relates to #6. Vaccines do cause injuries and if you can prove it caused or otherwise complicated a pre-existing condition, you may win.
  8. “Vaccine injury” is pretty vague here… so I’ll assume that you’re specifically talking about Autism. First, this doesn’t relate to the claim that there is less autism since the child may very well have autism. Second, again, there needs to be proof that the vaccine specifically caused the autism.
  9. SIDS isn’t new and certainly isn’t made up. Also, it happens with or without vaccines. Finally, what does this have to do with autism? If your child dies of SIDS, there’s a very good chance that your child was far too young for anyone to ever know if they had autism or not.
  10. First, how does this add to the claim that there is less autism in the world? Second, please find me cases where this has happened. Does this happen often?
  11. First, how does this add to the claim that there is less autism in the world? Second, you think shaken baby syndrome was made up to explain away vaccine injury? Like the last point, most likely your child was far to young to know about autism and finally, I invite you to shake your baby a whole bunch and see if they become vaccine injured.
  12. First, how does this add to the claim that there is less autism in the world? Second, side effects from vaccine injury? That’s redundant. But nitpicking aside, no one ever said they’re normal. There are rare cases where children become vaccine injured. No one has ever denied it.
  13. First, how does this add to the claim that there is less autism in the world? Second, I believe Wakefield could have bought a couple of houses with how much he made from lawyers during his vaccine studies. Each side has a doctor on the take. Therefore they cancel each other out.
  14. First, how does this add to the claim that there is less autism in the world? Second, I’m assuming you are referring to the H1N1… which was one year. Can you name 4 others in the last 5 years?
  15. First, how does this add to the claim that there is less autism in the world? Second, no one ever said you won’t still contract the disease which you were vaccinated against.
  16. First, how does this add to the claim that there is less autism in the world? Second, your other points seem to have determined that it’s too many vaccines or mercury or that a vaccine in particular. And yet now it’s a mystery?
  17. First, how does this add to the claim that there is less autism in the world? Second, they do all the time. Why do you think they give vaccines in certain combinations? Also there are studies, such as this one.
  18. First, how does this add to the claim that there is less autism in the world? Second, you are clearly unaware of the incredible amounts of malpractice suits and in other points, you reference vaccine courts, where many people are paid through settlements. Clearly it is their fault sometimes.
  19. First, how does this add to the claim that there is less autism in the world? Second, I’m pretty sure you just made this up.
  20. First, how does this add to the claim that there is less autism in the world? Second, I’ve never been bribed, I wish I had been. You’d be better off with the blackmail route what with schools not accepting unvaccinated children.
  21. First, how does this add to the claim that there is less autism in the world? Second, doctors are paid the same whether they vaccinate your children or not.
  22. First, how does this add to the claim that there is less autism in the world? Second, if the parents are bribed and the doctors are bribed, why bribe the school? And how would that work anyway?
  23. First, how does this add to the claim that there is less autism in the world? Second, there’s just so much wrong with this. You said it was vaccine overload, then it was combinations, then it was a bunch of vaccines so they can’t tell which one. Now it’s mercury which is out of just about all vaccines… actually, never was in any vaccines. Ethyl-mercury was, which is entirely different from methyl-mercury. Not that anyone would ever “give the unvaccinated the same amount”.
  24. First, how does this add to the claim that there is less autism in the world? Second, when you say “any doctor”, you mean just one doctor. Which is convenient that you think removing a man’s medical license due to his falsifying his findings and committing fraud is akin to beating him up yet the man that stole money to buy a house was much higher up on your list.. and both somehow add to the claim that there is less autism in the world?
  25. Are you now saying that #1 was actually true? What would you say it proves if Aspergers is removed and the Autism rates go down? Also, Aspergers wasn’t “taken out”, it just isn’t mentioned. Many with Aspergers would still fit the criteria, they’d just have their diagnosis changed to reflect the new “severity” levels in the DSM-V.

For the most part, this is just a big list of attacks on vaccines and really has very little to do with Autism what so ever. It has even less to do with any such claim that there is less Autism.

For each point that I started with “First, how does this add to the claim that there is less autism in the world?”, there was no relation to Autism what so ever. That’s 19 times out of 25? And that was being generous, I could have included a couple of others.

Again, don’t get me wrong, I’m all for making vaccines safer and greener and getting that risk of vaccine injury/reaction down to 0% or as close as possible. I’m also all for parents looking out for their children’s best interest as well as other children’s as well.

However, seeing notes like these just get under my skin. They don’t anger me, but they do bother me.

It’s sad that it’s gotten to the point that people not only think this way but go out of their way to take a whole bunch of vaccine hatred and aim it at Autism.

Many of the points were made up, assumed and just plain wrong. I even included links with some just to prove it.

But more so than that, my son has Autism. He was NOT vaccine injured. In fact, he never even got so much as a fever from his vaccines. You’d never even know he had any.

When you make these notes and make people hate doctors, hate people preventing deadly illnesses and even  make people hate a part of what makes my son who he is… it bothers me.

Yes, some people (children mostly) are vaccine injured. No, vaccines are not 100% safe. That’s all you need to say. Stop dragging me and my child into it.

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When logic trumps emotion, this is what you get

I recently got Gnomeo and Juliet for the boys, it’s quite the cute take on an old classic. Also, it’s very bright, colorful and full of action. Just perfect for a couple of energetic young boys.

I don’ t want to spoil the end for you, so stop reading now if you don’t want to know… They don’t die at the end. Actually, instead, there is a really great feel good moment at the end that should make you quite happy.

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As the moment happened, Tyler (my 3 year old without Autism) jumped up and said “hooray” and gave me a big hug.

Contrast that with Cameron (almost 6 with Autism) who said “Dad, he has blue hat!”

Now, it’s not that Cameron wasn’t happy at that moment, it’s just that he had made an observation and that became his primary focus.

This tends to happen a lot and some people mistakenly think that Cameron has no feelings or that he lacks empathy but the truth is that it’s just not what comes out of him at the time. The feelings are in there.

Just because the logic trumps the emotion, it doesn’t mean that the emotion isn’t there.

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Trying to fit in with the wrong crowd

I want to share with you a conversation I had recently with someone that isn’t even on the Autism Spectrum, but as you read, I want you to think about how it relates… because this was advice that I had given her as if she was on the spectrum.

Her story

She is a young woman, mother of two and very loving. She’s never understood other parents who are eager to get their children on the bus to school or off to daycare in order to have a break because she’s always valued her time with her children so much that being apart from them never felt like a break.

She was always great at school, always had a good job and always took her responsibilities very highly. Even so, she still loved to get out into the great outdoors, do hiking, camping and even had her hand in a bunch of sports.

Since having children though, she’s given most of that up for the sake of her children, not that they need her that much, just that she’d rather spend time with them than to be out doing other things.

The crowd

The friends and family she has are quite a bit more carefree than she is. That is to say, they enjoy getting their breaks from their children. It’s not that they don’t love their children, and all children too, as much, it’s just that they also value their freedom.

As such, the crowd tends to go out, drink a lot, party it up and endure the hangover the next day. They are more inclined to find ways to get their children out of the house to make sure that they can be as loud and obnoxious as they can be without affecting the children. Again, they love the kids and they’re really not obnoxious but they have the freedom to be if they so choose without children being there.

The problem

One night, the woman found herself quite down on herself as she pondered her own short comings. She was boring. She was no fun. She was a square.

She began to realize that she didn’t like partying, she didn’t like drinking and she certainly didn’t like being obnoxious. She tried her best to go out dancing with the crowd and she did her best to have fun with them. However, most of the time, she didn’t drink, she didn’t try to have conversations over the very loud music and she didn’t want to stay out too late because her children would be up early the next morning.

She felt like a loser.

Meanwhile, the crowd felt weighed down by her. They depended on her to do the driving, they depended on her to be a part of the high spirits of the evening. And no matter how much she danced or sang or got obnoxious… she was never really one of them. She never quite fit in.

She knew it, they knew it.

You can’t fit a square peg into a round hole

Square Peg in a Round HoleThe reality of the situation is that she doesn’t fit in with the crowd. They like it loud, they like to come home late and they like to be carefree. That isn’t her.

That’s not to say she isn’t fun. As I said, she has her hobbies and activities and she actually does drink. She just likes to drink in a quieter setting where she can talk to the people she’s with…. at a time where she can still get some sleep before her children wake up.

They value their freedom, their drinks, their late nights and their loud music. That’s fun to them. It’s not fun to her… yet she tries. She tries so hard.

Yet no matter how hard she tries, she feels like a loser. She feels like she can’t have fun, she feels like she’s boring.

Is she who she thinks she is?

Think about this. What happens if she finds another crowd that actually enjoys doing what she enjoys doing? Will she still see herself as boring?

See, what’s happening is that she’s trying to have fun doing what she thinks is not fun, in order to fit into a crowd that doesn’t fit her.

She’s altering who she is to fit who they are and rather than becoming what she wants to become, she’s depressing herself because she’s not that person. In the process, she loses who she is. She’s not them, she’s not herself… she doesn’t feel like she fits in anymore. That’s a lonely and dark place to be.

When you try to fit in with the wrong crowd, no matter how hard you try, you become someone you’re not. Either you succeed and you’re doing things you don’t enjoy or you fail and you’re unable to do the things you don’t enjoy… either way, you are left feeling like a shell of a person.

How does this relate to Autism?

More and more, we try to “integrate” Autistics into “normal” classes and “normal” society… we teach our children the mannerisms, what certain expressions mean, how to behave in certain situations and so on and so forth but for the most part, we have to remember that what we’re doing is helping them to fit into the wrong crowd.

That’s not to say that I know what is or isn’t the “right” crowd, but I do know that those people with Autism that are unable to tell what others are thinking or feeling are very rarely going to feel like they fit into which ever crowd they may find themselves in.

When they say that depression is common among those with Autism, you have to realize what it is that we’re not only asking of them, but trying to force on them.

The woman that I talked to was simply doing her best to fit in with people that weren’t the right people for her… she may be unaware of why she’s becoming depressed but she’s still doing it willingly.

With Autism, we’ve given most of them no choice. It’s fit in or you don’t belong.

Can you imagine how hard that is??

We can’t stop helping our children and loved ones with Autism to “fit in.” They do need to be able to navigate the world on their own but we have to remember what it is that we’re asking them to do.

The woman in the story can learn where she’s going wrong and adjust her own search parameters to find the crowd that better suits her.

My son can’t.

The only alternative to help the woman, and my son (all those with Autism) is to help them be comfortable with who they are. To help them to fit in still, but to understand why they don’t quite fit the mold as well or as easily as others do and to be content with themselves despite that.

Recognize why the crowd looks at them differently and why they look at the crowd differently and be happy with themselves despite that. Accept the crowd and the crowds differences as the crowd accepts theirs.

Square pegs don’t fit into round holes. Don’t stress yourself or depress yourself in trying. Be happy with who you are.

When you do understand it and accept it, you’ll feel better about yourself, the crowd will feel better about you and even though it still won’t quite feel right, it’ll be a whole lot better.

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