Do you really want my honest opinion?

It’s certainly not that those with Autism can’t find something pleasant to say, or that they’re not capable of “lying” for the sake of being nice, but chances are that if you ask for their opinion on something, you’ll get an honest answer.

First of all, I don’t want you to think I’m stereotyping here at all because it’s not my intention. However, this does illustrate how, in some cases, this is very much the truth.

Yesterday, while Cameron (5 yr old with Autism) was at school, Tyler (3yr old without Autism) was home working with building blocks at the kitchen table. He is the little hands on one, needing to have a paint brush, marker, chalk or building blocks of some kind on the go at all times… but he’s 3. He’s doing well but let’s be honest, even stick figures are a little beyond him yet.

So Cameron gets home from school and Tyler’s very excited to show off his work… he has quite the large, elaborate collection of blocks strewn out about the table, in what to him, is a nice pattern.

As soon as Cameron gets close enough, Tyler runs and says “Look Cameron!! Look Cameron! Look what I did!”

Cameron drops his winter coat onto the floor and says “it’s nothing.”

This is where my wife and I step in and ask Cameron to say something nice, to be nice to his little brother, to make his little brother feel good… yatta yatta… Cameron continues to insist that it’s nothing, that there’s nothing else to say.

So we say that if he can’t be nice to his little brother, he’ll have to play by himself for a while to which he quickly says “no!! It’s a caterpillar!!”

It’s not that I want to be mean, I knew he’d change his tune (not exactly that he’d see a caterpillar though) and I really don’t want to teach him to lie exactly but learning to share a nice word of encouragement is a pretty important skill.

This hasn’t been the first time, not by a long shot. And you never really realize just how hurtful honesty can really be when all you’re trying to do is get someone to acknowledge your hard work…  and you’re 3.

Over time, I’m sure he’ll learn to throw a “ya, that’s nice” just to avoid getting into trouble again but I also know that in the back of his mind, it’ll always be a conscious decision that he’ll have to make any time someone asks for his opinion.

When you say “be honest with me”… do you really mean it? Do you really know what you’re asking for?

If not, I welcome you to ask my 5 year old.

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My boys are never more different than when they are sick

T’is the season for.. illnesses.

It’s never a fun time… either your children are sick and you’re getting no sleep or you’re sick and you’re getting no sleep or everyone is sick and… what’s sleep?

The last week now, both of my boys have been sick. I’ve been lucky enough to avoid it but having now just told the world that, I fully expect to be sick around this time tomorrow.

My oldest son is 5.5 and has Autism, as such, he tends to be pretty energetic and what you would call, pretty wild. He tends to be all over the place. My 3 year old does not have Autism and while he is also a ball of energy, he’s more controlled and less likely to be all over the place.

Introduce the flu.

3am rolls around and both boys are heading to the bathroom, neither of them is happy. Coincidentally, neither am I. I’m not mad either but I’m certainly not happy.

So the morning creeps up in my sleepless haze and I am on the phone to tell the bus driver not to stop here today and I’m trying my best to get my boys to drink some water and I can barely keep my eyes open… but as the day continues forward, something becomes very clear to me… my boys handle illness so very differently!

Cameron, my oldest, who is usually all over the place, is now fast asleep on his bedroom floor, or lying in a corner behind stuffed animals, or just laying down all glossy eyed on the couch. He doesn’t complain though. He sort of feels something isn’t right but otherwise, feels no pain. He just wants to be left alone.

Tyler on the other hand, that is usually far more controlled, is drawing on the black board, throwing toys all over the place, asking to go outside and play in the snow and really not wanting to have his afternoon nap. At the same time, he cries because his tummy hurts so much or because throwing up is so yucky. He becomes the ultimate sucky sicky.

I don’t have any profound bit of knowledge or any insightful reasoning to share with you as to why this happens but I do find it intriguing enough to write about.

As I shared these revelations with others on Twitter and Facebook, I found that I wasn’t alone in having an Autistic child kind of “shut down” when sick.

Cameron has an unusually high pain tolerance and for his entire life, even when very young, we really would have no idea when he was sick except for the fact that he’d just lay there instead of playing or doing anything.

Tyler, on the other hand, we’d know immediately because he’d cry in his sleep, before even he knew he was sick.

They’re brothers, one does something funny, the other copies… they share everything, they say the same words wrong, they want to have the same cups, pajamas, treats and games. They get on each other’s nerves but they want to be like each other.

But when an illness strikes… they couldn’t be more different.

By the way, they’re both feeling much better now which is why I’ve finally had time to write about it. But now, I’m going to crawl into bed and get some sleep!

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Autism and Facebook – A how to on Friends Lists

I’ve talked to several parents that use Facebook to share pictures and personal information, many are quite frightened of what they put out there and more importantly, who is able to see it.

Facebook has become quite complicated, that’s what happens when you try to give everyone everything. However it does have security measures in place to help you protect your information.

Privacy Settings

There are a lot of articles out there on “Privacy Settings”, if you haven’t read any, I strongly suggest that you look them up. This is probably the most important aspect to protect your data as it will determine what people will see from outside of your circle of friends.

However, since there are so many articles out there, most are better than what I can do, I will skip that and move on to something that I know very well: Friends Lists.

Edit Friends

At the top right corner of the Facebook website is a menu called “Account” with a down arrow beside it. This indicates that if you click on it, it will drop down to reveal more options.

Click on that and you should see a menu that looks like this:

Click on the “Edit Friends” menu option to be taken to a page where you will now see a list of all of the friends you have. Also, on the left of that, you will see the lists available to separate your friends into.

Create a List


At the top, there is a Create a List button. Click on that and a new little box will pop up. This gives you the chance to name your list as well as pick people from your friends to put into that list.

I suggest creating lists such as Family, classmates, coworkers, Autism and FB Games.  You can have way more, or not even use what I suggested. The options are yours. I suggest these for specific reasons that I will show you later.

Edit Lists


When you have your lists created and you’re looking at the page with all of your friends on it, you will see little “Edit Lists” menu options next to each of their names. You may have to put your mouse over the person’s name for it to appear.

When you see it, mouse over that Edit Lists text. If that friend belongs to a list or several lists, they will appear in a little black box next to your mouse cursor.

When you click on it, a box opens showing you all of your lists with checkmarks next to the lists that this friend belongs to.

From here, you can put people into one or more lists very quickly.

Using Facebook

Providing you read up on your Privacy Settings and you now have all of your friends tucked away into your lists, you are now ready to use Facebook with some peace of mind.

Here’s how it works.

When you do just about anything, whether it is setting your status, sharing a link, adding photos or just about anything else really, you will be able to see a little “lock” icon next to the action you’re taking.

By default, it should be set to “Friends Only”, if you mouse over it, it will tell you. It should look like this:

Once again, you should notice the down arrow. This means that clicking on it will offer you more options. So click on it before you do anything else.

Choose your friends wisely

Once you click on that lock icon, you will be given a new little box where the real power lies.

This box is divided into two. The top portion has people that CAN see what you’re about to share and the bottom portion has people that CAN NOT see what you are about to share.

The first thing you should notice is the drop down which allows you to choose if friends of friends can see what you’re sharing, if just your friends can see it, if only you would ever see it or.. my personal favourite, “Specific People…”

Specific People is what I ALWAYS choose. There’s almost never a time that I wish to share one thing with everyone but obviously everyone is different.

Once you select Specific People from the list, a new little box will appear for you to type in. As you type into this box, magic happens. As you type the name of a person, it will give you boxes that you can click on with your mouse to choose those people. The thing is, it works with lists as well.

As you type “F… A… M… “… the Family list will appear. Click on it and a blue box with the word Family will appear indicating that the only “specific people” that will see what you’re sharing are the people in your “Family” list.

Once you’ve chosen the list(s) or friend(s) that can or can not see this, click on Save Setting and then proceed with sharing as you normally would.

There are some links and status messages that I wish to share with ONLY people that I know from the Autism community, so in those cases, I choose the Autism list. I play some games like CityVille… in those cases, when a game wants me to request things from people, or put something on my “wall”, I choose the “FB Games” list.

This way, none of my family or Autism people will never see CityVille requests. Likewise, family won’t be bogged down with Autism links that they likely won’t read.

Keep in mind, this exact same thing works with the “Hide This From” portion of the box. You can choose lists to exclude. So if you want everyone in your friends list to see something except your family… you can do that too.

Conclusion

Facebook is supposed to be about friends only, so sharing information shouldn’t be a problem… they’re all friends. But the simple truth is that even if you have nothing to hide, some people in your friends list simply don’t need to see what you’re sharing.

Sometimes though, you do want to hide some information from some of your “friends”. That’s just how life is sometimes.

Take the time to make your lists. Do it now before it becomes too big of a job. It’s easy to maintain because each time you add a new friend, you’re given the option to immediately put them into some lists.

Once you do this, all of those Autism links you share with Autism friends will never be seen by anyone that is not in your Autism list. All those family pictures will only be seen by family members. It’s as simple as that.

Final Word

Once you have all that done, and you’ve read those articles on Privacy Settings (you have read one, right?), you can now revisit your Privacy Settings and customize them.

Your lists will play a STRONG part in the over all privacy of your Facebook experience… not just what you share, but what people see in general.

For example, yes… if you enter your cell phone # into your details, it will be there for all to see. But not if you adjust your Privacy Settings. Go to customize, scroll down to the Contact section and click on the box next to Mobile Phone. Choose “Custom” and start picking the lists that can and can’t see your cell phone #.

It’s that easy, once you have the lists in place.

Your privacy is very important, your friends getting information thrown at them that does not interest them is also important to consider. For these reasons, you really should use Friends Lists on Facebook… and use them at all times!

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The importance of friends in Autism

I’ve often found the concept of friendship quite complicated. So many people try to define it with inspiring quotes such as “a friend is someone running to you when everyone else is running away” or “a friend helps you move, a true friend helps you move bodies.”

Just about the only thing close to being as important as family (in some people’s case, it’s even more important than family) is a good solid friendship. Quite often, in certain circumstances, friends will be there for you even when family won’t.

The point of this is that when it comes to Autism, at least in the case of my own son, the concept of friendship is so much more complex than that, yet… extremely simplistic at the same time.

To watch my son at school, you see all of the children kind of play side by side but there is not a lot of actual playing together. It’s almost clinical in the way that the children go here, go there, do this and do that as though they’re only vaguely aware of each others existence.

But they are aware, I could argue even more aware of each other than children in a ‘regular’ classroom might be. You can ask any one of them what the other children are doing and they know, they know what each other likes and dislikes.. they know who they like more than the others.

One child in my son’s class is “lower functioning” than the others and so he doesn’t talk, he gets aggressive sometimes with a push or random hair pull (far less since he started he started in September) but obviously, he’s not one of the children that my son identifies as a friend. The others are.

He gets excited when his friends birthdays are coming up even though they spend their birthdays at separate tables, doing separate things, eating things separately.

Doing something together – Not what is important

For my son, doing something together is not what is important. Doing something together leads to conflicts, leads to him possibly losing (if it’s a game)… he, and his friends in his class, are very happy knowing that each other is there, even if seated at separate tables. And when one child isn’t there, Cameron tells me about it. If it’s a friend that he particularly likes, he may even be disappointed or sad.

Familiarity

This is one of those things that builds a level of friendship but doesn’t create nor define the friendship. Keep in mind, this is from the point of view of my son… but he can consider someone a friend from the moment he meets someone. Primarily because he has no reason to think they’re not a friend. They have not done anything wrong to him, so I guess the old “innocent until proven guilty” motto is what he goes by. And rightly so.. children should know not to take candy from strangers but shouldn’t have had to deal with anything traumatic enough to make them believe that people are out to get them in some way. Why wouldn’t they like people until given a reason not to?

So easily defeated

When the children do play a game together, the adults over-seeing the games tend to try to make it as fair as possible, whether it’s their teachers or us parents. Everyone gets a turn to win. But that’s not always how it works out, there isn’t always an adult there or someone just doesn’t get their turn to win, for what ever reason.

It’s at moments like these where my son will not only break down but remain in a very miserable funk for the rest of the day as he declares to the world that no one will ever be his friend ever again… no one lets him win.

This can happen for many reasons, such as not sharing, not listening to his wishes/demands and so forth… a friend that isn’t doing what he thinks as the friendly thing to do immediately sends him into a tantrum filled tirade about how he’ll never have friends again.

And to think that some doctors still try to convince me that people with Autism are emotionless.

Easily abandoned

Sometimes he doesn’t feel like he’ll never have a friend again, sometimes he’s all too eager to throw away what ever friend he does have the moment he’s mad at them.

Now, this is more of a “every child goes through this” thing than it is an Autistic trait, but it still is worth mentioning… mostly just because us parents know it’s cute.

Your child does something wrong, you send them to their room or for a time out and they storm off yelling “That’s it, you’re not allowed to be my friend anymore!”

You try not to let them hear you chuckle because this is very serious to them. In the case of Autism, perhaps even more so because as I have mentioned, friendships are so very important.

Conclusion

All too often I read or hear about people saying how their children with Autism can’t make friends, or are constantly heart broken about not having friends or the worst one… are incapable of having friends.

In many cases, it is true that some of these people do not have friends, or lose friends and so forth but also, in many other cases, it is part of the overly complex nature of the simplicity that is involved.

I don’t profess to know how it is for you or your children, every individual is very different. What I can tell you though, is that friendship is extremely important in my son’s life… so important that if he’s mad at you, you don’t get to be his friend, if his friend isn’t friendly, he’s lost all hope on friendships, if a friend isn’t there, he’s sad.

If I wasn’t able to be in his school from time to time, if I wasn’t able to hear from his teachers and the parents of his classmates, I might not know how serious and how not serious some of the things he says are.

Next time I hear a doctor tell me that people with Autism are emotionless, or unable to have real friendships, I’ll have some words for them… clearly those doctors either don’t deal with people that have Autism or they aren’t paying enough attention.

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Awareness is not enough! We need Autism Understanding and Acceptance

For the last couple of months, a quiet movement has been going on behind the scenes with several Autism charities and companies.. a movement to hijack and upgrade Autism Awareness Day on April 2nd.

What all of these companies need is for every single man, woman and child that has or is associated with Autism to share a message on that day. The message has 2 parts:

  1. A common message, shared by all, uniting the entire community in a single voice. That message? Awareness is not enough. People have to KNOW what Autism is.
  2. A unique perspective on what Autism is to you. Your experiences, your story. No matter how beautiful or ugly, whether you see Autism as a gift or a cure… you tell the world what Autism is to you.

The goal of this is to show that we’re not as divided as most people think we are, especially those pesky media outlets. We do support each other, we do fight together and we do speak together.

At the same time, we will educate the world once and for all on exactly what Autism is… it’s wonderful and terrible, beautiful and ugly. People will look past the media’s view of Autism (which generally is the image of a 2 or 3 year old child that was just diagnosed and the young family that now has to deal with that diagnosis) and see what the media forgets to show the world.

This is NOT an effort to tell people that we do not need a cure, nor is it to tell the world that we do need a cure. It’s not a place for debate over current research studies or treatment methods. This isn’t about you, this isn’t about me and it’s not even about the charities/companies that have agreed to get involved.

This is about Autism and the people that have Autism. Who they are, how it effects them and their lives and most importantly, how the world needs to better understand them and better accept them.

Please join in, spread the word, share the message and tell your story. Write them on your blogs, newsletters, press releases, tell them to people… we are also going to provide a means of sharing your story with the media!  Imagine, millions of people sending the same message to the media all at the same time. They’ll be shocked!

Let’s make sure the world is far more than aware… let’s make sure they KNOW what Autism really is.

Join here, see who’s involved and what the shared message is. Let’s come together to share ideas and make this a day that the world will never forget: http://www.facebook.com/AwarenessIsNotEnough

Autism Understanding and Acceptance

Autism Understanding and Acceptance

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