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Thinking about doing live webcam chats via Google+ about Autism

By on July 15, 2011 in Autism

google plus logoI’ve been playing around with Google+ for a little while now (and by little while, I mean days because it’s only been around for a couple of weeks) and I find that the hangout is quite the intriguing and underestimated feature.

Essentially, it’s a webcam chat where you can chat with several people all at the same time. There’s a limit on how many… 10 I think, but still, it would make for quite the intriguing chat with people.

This is a little more personal, being face to face (to face to face… etc) which can be a little unnerving for some people. But it also allows for more real time discussions as you can ask questions quickly and get answers in real time.

If it proves to be popular enough, we could schedule chats in advance and set topics for each one.

Also, since I’ve made some good contacts, I could even get some prominent people in for a discussion or two from time to time.

What are do you think? Would you be interested in doing something like this? Does this sort of thing have potential?

If you would like to join me on Google+, please add me to your circles at http://gplus.to/autismfather

For more about Google+’s hangout, watch this:

httpv://www.youtube.com/watch?v=Tku1vJeuzH4

 

 

 

 

 

 

 

 

 

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Disgusted and Offended by some in the Autism Community

By on July 14, 2011 in Autism

I pride myself on being able to exist on both sides of the fence… not just straddle the fence, but to have my feet planted firmly on each side. But sometimes, someone or some group comes along and says something that really makes me seriously question my resolve.

I understand where the tensions, the frustrations and even the hatred can come from when people begin arguing over what they feel is best for their children. I also understand how hurt people can be when they feel violated.

However, understanding it does not mean that I feel they are validated in making some statements or in taking some actions… such as chemically castrating children in an effort to cure Autism. That’s not ok.

When discourse fails, make them your enemy

So one group has recently been quoted as saying:

“We need to get militant, and I mean in a way that scares those in power. You know what I’m talking about.”

I am hoping that this is just strong wording to make a strong point but still, really… do we need military terminology and “you know what I’m talking about” (nudge nudge, wink wink) insinuations?

What exactly is it that you’re talking about? Combat? War? Is it really logical that if someone doesn’t do as you ask, that you become their enemy? Will that make them listen to you? Probably…. not.

“Those in power” are not your enemies. No matter what you think. And if you want people to work with you, maybe getting “militant” is not the best option.

If you can’t convince them, call them baby killers

July 10th must have been a particularly bad day for this person, that tweeted not once, but three times:

autism divide 1

Immaculate huh? My guess is you just made that up rather than use a word that any sane person would have used.

autism divide 2

Is that so? I support autism the way a father supports a child that is growing up in a society and school system that is not yet equipped to understand or accommodate him. Granted, all of that doesn’t fit into 140 characters, I still can’t help but think you were going a different way with your meaning.

autism divide 3

I’m not sure I have the time nor web server space available to explain all the ways this is just so wrong…  but I have to question, what exactly would you propose? That all research just halt, ignore any findings that suggest genetics as a cause and declare environmental factors as the sole cause?

Oh wait, that must be it. You’re so certain that if they do discover the genes, if they do discover an actual definitive cause… that parents may get the option of detecting it in their unborn children and thus, have an abortion. Which means that you’d rather silence science and avoid the (possible) truth for fear of abortions.

Because if you truly cared about science or the truth or our children… you’d want the answers. 

By the way, just to finish the point, abortion is not the “end game.” But there’s very little point in explaining that. Those who know it, know it and those who think it, can’t be convinced otherwise.

So disappointed

I just can’t believe that people write this… I more so can’t believe that they not only share it but try to get others to think likewise… and the absolute worst is that this is from an organization that is in the position of influence over parents.

I don’t care if you believe vaccines are the culprit, I don’t care if you believe doctors really are out to hurt our children….. statements like this are just not ok.

There are no “camps”, we’re all on the same side!! We’re not at war and no one is out to abort children. We can’t just stop science because it might result in an answer that we don’t want to hear.

If statements like these were made by individuals as an opinion, I’d just roll my eyes because as I said, I can understand what drove them to it. I don’t approve, but I understand.

But because these types of statements are made by organizations with actual influence over people, I have to voice my objection to this. It is not acceptable to encourage others to think this way.

What are your thoughts??

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Summer routine? What summer routine?

By on July 14, 2011 in Autism

routineThe school year seems pretty crazy while you’re going through it… assemblies, meetings, field trips… but in reality, it is such a wonderful base for all routines. Up at the same time, in bed at the same time, eat at the same time, on and off the bus at the same time… it’s perfect. Well, as close to perfect as you might get.

Then the school year is over and summer time attacks your routine like a lion attacking red meat. The sun is up earlier, the sun goes down later, meals are rarely when they should be, you wake up and go to bed at different times daily and worst of all, you have no clue what day it is!

It’s strange too, because I do work Monday to Friday and yet I still find myself having no clue what day of the week it is most of the time.

So what’s the big deal?

Well, when you have a child with Autism, it is a very big deal. Routine is paramount to keep the meltdowns in check.

What happens is so gradual that you may not even notice it happening until it’s too late and very likely, you won’t put the two together as a cause and effect situation… but in time, your child will start to become more agitated, more prone to meltdowns, less likely to eat, less likely to sleep and more.

Missing out on your routine one day might not have much of an effect on the next day but over time, you will likely find yourself asking yourself why your child is misbehaving so much despite your best efforts to give them fun stuff to do.

So what can you do?

Well, there are a few things that can help with this.

  • Camp – Many children go off to summer camp for at least a part of the summer. Camp is a great place for routines as well as keeping your little ones occupied. Specialty camps are available almost everywhere for special needs children now too.
  • New Routine – So you wake up later, stay out later and eat later… so make it a new routine. Just make sure that the times you set are the times you stick to. Also, keep in mind that school will be starting again before you know it so before it’s too late, you’ll have to start adjusting those new routines back a bit to meet back up with the old school routine again.
  • Alarm clocks – Notice it’s plural? If you want to keep your bed time routine the same as well as the wake up routine… set 2 alarm clocks. One for the time you wish to wake up and one for the time you want the kids in bed. The one for waking up should almost never ring since your children will wake up at their regular times anyway but for those times when you do fireworks or camp fires.. your little ones might be up late. And it’ll be painful to wake them up rather than let them get the sleep they need but that regular wake up time makes for a regular bed time later that day.
  • Strict planning – A big part of routines falling apart in the summer is that you’re rarely home. The beach, park, camp and other places seem to eat the time up faster than you can keep track. And you’ll seem like the downer of the group for keeping an eye on the clock (watch, cell phone) but getting the lunches right at lunch time, the dinners right at dinner time and so one are very important. You don’t have to be home to get things done at the right time.
  • Sacrifices – Sometimes, sacrifices can be made. For example, my boys are still a bit young for fireworks. They do love fireworks, mind you, but it’s not a priority. For Canada Day, we spent the entire day at the beach, water park, playground and with friends. They were ready for bed long before it was dark enough for fireworks. Did they miss out? Maybe on the fireworks but on the day? Hardly. They loved every second of it. My wife and I were the ones who made the sacrifice. We’re the ones who missed out but you know what? It was worth it.

Depending on your child, routines have to be strict or relaxed or, if you’re one of the lucky ones, are not all that important at all.

If it is important to you and your child, if you’ve had a good routine for most of the year, you may want to consider it into the summer as well because as I said, things might start going south and you won’t even realize why until it’s too late.

A routine is much more difficult to fix than it is to maintain.

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He eats solid food!

By on July 13, 2011 in Autism

Cameron is just about to turn 6, in 15 more sleeps (as he calls it), but has only just started to actually eat solid food.

Well, that’s a bit misleading.. the truth is, he’s eaten pasta and potatoes and rice and such for a very long time but his potatoes were always mashed, pasta always soft… it’s been a constant ordeal at meal time.

For over 5 years

Any time we tried to get meat into him, we had to blend it or pick it apart into tiny little pieces that could be hidden in his potatoes. Like, tiny tiny.

Here we had his 3 year old brother eating pieces of pork chops, steaks, chicken… his potatoes were in pieces…. and yet his older brother was still getting a bowl of slop.

If you’ve ever questioned if autistic people could have texture issues with their food, we had living proof.

How did we change it?

Supper TimeTruth is, we didn’t. He did.

He decided when he was ready. We started slow at first, gave him pieces of potatoes instead of mashed… and for a long time, he wouldn’t touch it. Finally one day, he did.

After that, we started giving him small pieces of chicken… like, very little cubes. To our surprise, he tried them. He didn’t eat them, but he tried them.

We never stopped giving him those pieces though. We always presented him with the options, never being upset if he didn’t eat it. Eventually, he did!

Looking forward

It’s been a couple of months now, we no longer blend or mash his food for him. He now eats a few pieces of meat with his dinner, he now eats potatoes in pieces when the rest of us do.

We don’t have to boil his pasta to the point that it turns to mush.

He still doesn’t eat a very large variety of foods, it’s still mostly pasta, potatoes and rice… and he’s still on a rather strict gluten free diet, but now we can add in a few things here and there that he’s at least willing to try.

He’s almost 6… and it’s going to be a very adventurous year, because along with a whole new year of new discoveries and experiences, he’ll have a whole new diet. It’s very exciting!

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The last word on “person first language”

By on July 12, 2011 in Autism

I am writing this for one reason: far too many people tell me what to say, so instead of explaining to everyone, I’ll just give you this link. Please read.

The idea

The idea behind “person first language” is that you put the person first, for example: person with autism. This emphasizes the person and not the disorder. Fine. Or so I thought.

But then I heard from several (and by several, I mean a LOT) of “people with autism” who specifically told me that they prefer the term “autistic” because autism is very much a part of who they are and how they perceive the world. They accept it, they embrace it and they want to be known as such. Fine. Or so I thought.

Not every “autistic” feels that way. Some actually do prefer “person with autism” because they hate how much autism has made their life suck (their words, not mine, really). Fine?

For some education systems, the teachers are actually told to use “person first language” because that’s what some parents insist on and it’s best that the education system not aggravate the parents. Fine.

So which did you tell me to do?

Here’s the thing. If I have dozens, even hundreds of “autistics” tell me to call them “autistics” because it’s what they want and then I have dozens, even hundreds of parents tell me to use “person with autism” because it’s what they want…. who do I side with?

Nobody.

I don’t take sides. First of all, it’s just ridiculous anyway. Seriously, is this what we spend our time on? Is this really a reason to get mad at each other? Can something this childish really begin to divide a community?

Well, no. The truth is, there’s a third group of people. They’re the “I don’t care” group. I love this group.

For most “autistics”, which are “people with autism”… they don’t care. Actually, they’d prefer you call them by their name. They’re more likely to respond. Further more, person, people, person of humanitarian decent…  you know, what ever. It really doesn’t much matter.

For most parents of “autistic” children, which are “children with autism”… they don’t care. Again, using their name is generally the best option. But those parents really don’t mind how you refer to their children so long as you do it politely, nicely and with respect. They are their children after all.

I fall into the “I don’t care” group myself but in a way, I do care. I mean, if someone tells me they prefer one or the other, I’ll do my best to use that one method with that one person. I respect their wishes. But if that person is in a group of people, all of whom have various wishes or don’t care…. well, be ready for a mixed bag of terminology.

Don’t tell me how to speak, I don’t tell you how to dress

dont tell me what to doQuite frankly, I find it rude to tell me how I am to refer to my own child. Who are you anyway?

When my son comes to that point, if he does, and he tells me he prefers one way or another… you can bet your life I’ll stick to that one term…. with him. I’ll still use another term with another person if it’s what that person prefers.

In the mean time, until he tells me, or others tell me which they prefer, I’ll use the term that best fits the sentence. Because “the journey of my autistic child” sounds far better than “the journey of my child of which has autism”. That can’t be right.

Anyway, if you’re reading this because you’ve told me what to say, please visit the closest Walmart, buy some overalls, cowboy boots, pink shirt with the ruffles and the biggest hat you can find and wear that. Because I feel it’s only fair that you do something for me too.

It’s not that I don’t value your wishes, it’s not that I don’t understand exactly where you’re coming from. I do. And if the entire world said in one unanimous voice that it should be one way… then I would abide by that.

But it’s not that simple. I don’t make one group of people mad for the sake of making another group happy. There’s far better things to focus on that can benefit all people than this.

Thanks for reading.

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