The boy who couldn’t say “good-bye”

By on October 7, 2010 in Autism

People tend to have a lot of questions about “feelings” when the topic of Autism comes up, the most obvious topics covered are the temper tantrums, the lack of eye contact and the refusal to hug or show love.

The questions range from the simple “why” to the more absurd “do they even feel love?”

Cameron is a very special boy who’s overcoming the odds, going from mild-severe Autism to… well, many people question if he was ever Autistic in the first place. However, he still is extremely reluctant to hug anyone, kisses are even more rare, temper tantrums still get the best of him…  in short, he still has Autism. But he’s doing so well.

One thing that has remained constant and I suspect always will for the rest of his days, is that he absolutely refuses to say “good-bye” to someone when it’s someone he loves and someone he knows he won’t see again for a while.

If he knows he might see you in a day or two, or if you’re just some random person, he might say it… more than likely you’ll get a “thank you” or a quick “bye!” to get him out of there.

But if you’re someone he knows, someone he cares about… there’s a very good chance that he won’t even want to be in the same room with you. And it’s not because he’s mad, or sad, or scared. And it’s not because he doesn’t feel it.

It’s because it hurts too much. It’s because he feels it all too well, on a scale you and I will likely never even imagine. He doesn’t say “good-bye” because he can’t say “good-bye”.

I have yet to hear him say it to someone and mean it… to someone he cares about. I doubt I ever will.

Do they feel love even thought they don’t hug you, or kiss you, or look you in the eye? In my opinion, if you were to put the amount of love Cameron feels into a scale and the amount of love you feel into a scale… an observer would be more inclined to ask you that question instead of him.

And you know what? Those that know Cameron, they get it. And they know they’ll never hear him say “good-bye” and they are just fine with it.

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Autism Awareness – What does it really mean?

By on October 5, 2010 in Autism

Just to clear up confusion first, Autism Awareness Day is April 2nd around the world and Autism Awareness Month is April for most countries. However, in Canada, Autism Awareness Month is actually October. And being that this is October, I thought I’d write out what Autism Awareness really means, at least to me.

When you hear the phrase, and many others like it (Breast Cancer Awareness, AIDS awareness, etc), you sort of laugh to yourself and think “awareness? Who hasn’t heard of them by now??”

There is obviously a lot more to these things than simply being ‘aware’ of it’s existence. It’s about being aware of the facts, aware of the people who are involved and aware of the struggles those people face.

Autism Awareness is about making people aware that it affects 1 in 110 children around the world, even more scary than that, 1 in 70 boys! I bet most people who are ‘aware’ of Autism had no idea that it was that prevalent.

Autism Awareness is not just answering questions from people but volunteering information they never would have dreamed of. For example, just last night I was talking to someone about how someone with Autism might not be able to distinguish facial features from person to person and will very likely be unable to recognize emotion from facial expressions.

They immediately asked if it’s common for all people with Autism.

The simple answer is no, but instead I proceeded to tell him that the ONLY commonality between all people with Autism is that there is no commonality between all people with Autism.

You can be sure that answer sparked up a conversation and he left informed and I left feeling a little better about how he’ll treat his neighbour’s child that has Autism.

On that note, Autism Awareness isn’t just about scary numbers either, like the ones found here, it’s about helping people to recognize things they might never have thought of before… like that strange child at all the family reunions that absolutely refuses to hug anyone, and just sits at a table by themselves… they’re not loners, they’re not strange, they’re not the odd one in the family.  They’re very much aware of everything happening all around them and they really do want to be part of it all, they just can’t. Stop judging them.

Autism Awareness is much more about understanding than it is awareness. It’s about understanding leading to acceptance.

The truth is, at 1 in 110, you’ve already met at least one person with Autism and likely didn’t even realize it. The question is, how did you perceive them. Did you judge them? Did you judge their parents? Did you dismiss them? Did you take the time to consider their thoughts and feelings?

Perhaps it would be more clear if Autism Awareness was changed to Autism Understanding and Acceptance… because, to me, that’s what this is all about.

Awareness is great for diseases, viruses, contagions… step up, learn the numbers, donate and help out.

But for Autism, and many other childhood disorders, what is truly needed is understanding and acceptance. Research, treatments, therapies… maybe even cures (in some cases and for some people)… these would be nice, but for now… right now, we need understanding and acceptance.

Only then will children and their parents not be judged, only then will there be jobs and opportunities, only then will there be funding available, more schooling options and only then will those with Autism not feel like an outcast looking into a world where they don’t belong.

Whether you are in Canada, reading this in October, or elsewhere reading this in April… speak up, inform and help to raise more than just awareness, help to spread ‘Autism Understanding and Acceptance’.

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Hooray for the Tooth Fairy!

By on October 1, 2010 in Autism

Cameron lost his first 2 teeth in the month of September… that’s 5 years and 2 months old for those of you keeping score. Both were the front bottom two teeth.

Now, the reason I’m writing about this is not that it’s been an issue, it’s that it’s been an unissue! Yes, I just made that word up.

You see, as parent of a child with Autism, it’s just such a wonderful feeling when everything just goes so.. normal! His teeth fall out when you’d expect them too, he’s excited about leaving them for the tooth fairy, like you’d expect him too, he loves getting money that he can spend on anything he wants, like you’d expect him too… it’s just… it’s normal and it’s wonderful!

Pulling his "CHEESE!" look with 2 less teeth

That’s not to say that his life is so bizarre or out of the ordinary that this is a completely unique feeling, but it’s still wonderful all the same. A lost tooth was definitely something that we thought could have lead to quite the meltdown or possibly some anxiety anyway. Sometimes you just crave those moments where you’re not thinking about the screaming fits, the therapy sessions, the talks with the teacher…. and so on. It’s just another day in the life of a child, as it should be.

And so here we have this toothless wonder, super happy that he’s getting to be a big boy, super excited that the tooth fairy comes just for him and gives him something super special that is just his own.

It’s pretty fun for the parents, any parents… but when most things are either delayed or don’t go as you might expect, it’s just that much more fun for me and that much more wonderful.

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Autism is not an excuse for failure, it’s a reason to try harder to succeed

By on September 30, 2010 in Autism

This is something I tell people all the time and my wife summed it up rather well the other day: “Autism is not an excuse for failure, it’s a reason to try harder to succeed!”

Too often I hear about people not going out because they don’t want to deal with the meltdowns or judging glances, or I hear about them just never trying to feed their child anything but what they will eat without a fight, or even worse… they let them get away with being rude or even bad behaviour because it’s easier than dealing with the backlash from discipline.

This child is still YOUR child! Your child is still YOUR responsibility. And no matter how violent, non-verbal or even how incredibly smart they may be… you are the parent and should be parenting your child. No it’s not easy sometimes, especially with Autism in the picture but no one said it would be.

I’ve written before about a comfortable rut, where you just continue along with what is easiest but in this case, I mean more than that.

I cringe every time I hear “sorry, he’s Autistic” come out of the mouth of a parent as an excuse as to why their child does something wrong or rude. It’s fine to explain that they’re Autistic and may be attributing to their behaviour, especially if it’s due to sensory overload or something of that nature, but it’s still not an excuse.

Practice makes perfect

The simple fact of the matter is, if you never take your child out because you don’t think neither of you can handle it, then your child will never go out… ever. How can you expect your child to develop coping mechanisms, or to learn how to process all that information or learn how to deal with it within themselves… if they’re never exposed to it?? They can’t. They won’t.

Avoiding the problem does not solve the problem.

So your child hits others, maybe a sibling… do you just accept it? Put oven mits on them so it doesn’t hurt as much? Or do you sit at your computer as long as it takes to find some possible solutions? Do you pound the pavement looking for doctors/therapists that have possible solutions of their own? Do you work with your child to find other outlets? Do you take them aside every single they do it, or just once in a while?

Being tired is not a reason for giving up.

Autism is not easy, even for the most gifted savants, they have issues that you and I couldn’t dream of… and life is not easy. But that’s not an excuse for failure. That’s not a reason for an apology in place of dedicated determination.

You have to try harder. Your child has to try harder.

I give my son no exemptions. He needs to be told every single bath time not to put the water in his mouth, so I tell him every single time. And every single time he gets disciplined. One day, he’ll stop.

He is not allowed to hit, no matter what his sensory processing disorders may be telling him. It’s simply not acceptable and no matter what his mind is telling him, I won’t allow it. It makes things hard and probably interferes with what his mind is telling him but that’s just a reason to try harder at finding a way to stop it.

There are always exceptions to every rule, there are times when circumstances mean removing your child from a situation instead of disciplining… also it’s important to note that when I say ‘disciplining’, I mean anything ranging from time outs to simply talking to them about it.

You don’t have to be the bad guy (mean parent) all the time, you just have to realize that you can’t allow yourself to be a pushover and let your child get away with things they normally wouldn’t… just because they’re Autistic.

No matter how severe or high functioning your child is, there’s no easy ways out. You have to go into the public and face the meltdowns so that you can both learn how to handle and even avoid them better in the future. You have to stop them from hitting, whether it means constant talks, time outs or doing more research than you ever thought possible.

You have to do more, your child has to do more. No one ever got further in life by giving up. Autism is not an excuse, it’s a hurdle. A much bigger hurdle for some than others but a hurdle just the same. The bigger the hurdle, the harder you have to try to succeed…. it’s not fair, but the alternative is to accept failure, for now, for always.

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Make the most of the online Autism community, Part 2 – Facebook

By on September 27, 2010 in Autism

At this point, you don’t even have to be on the Internet at all to still be able to recognize the name, Facebook. It’s the largest of the social networking websites, meaning that it brings together friends, family, co-workers and more and provides you with the tools you need to share your lives, such as photos, videos, links, notes, games and more.

The thing about Facebook is that it also has a few ways to to help you support the cause you are passionate about, let’s say…. Autism!

1. Causes

Causes is the section of Facebook where you can donate to your favourite charities or even invite others to donate, or simply join with you. The causes you join will appear on your main profile page in the Info tab. This will also keep you in the loop of what they are doing, providing they send out periodic newsletters or updates (not all of them do).

Causes is a great way to give/donate and to show who you support, but not a huge inroads into the community. But it’s definitely a great place to start.

http://apps.facebook.com/causes

2. Groups

There are a lot of Autism Groups but a Group is basically considered to be an extension of a personal account. As such, you can join them and share amongst the group but keep in mind that they’re most likely to be people like you and I administering them and doing with them as they please.

That’s definitely not a bad thing, the goal is to make the most of the online Autism community and as such, these groups are invaluable for discussing the topics of the group.

Groups are NOT indexed by search engines such as Google, so what ever you do there is within the confines of the group. If you are shy or just getting started, finding a small’ish group of like minded individuals discussing a topic you feel strongly about is a great way to get started.

For discussing causes in general, groups offer you the best freedoms as they aren’t usually specific to a person or company or brand.

Autism Groups – http://www.facebook.com/search/?flt=1&q=autism&o=69

3. Pages

Pages are basically profile pages but instead of people, they’re companies, organizations, celebrities, products… just about anything to be truly honest but usually is a thing or person. For example, you would make a Group on people who love bananas while you’d make a Page on banana peels…  and people would become fans.

Speaking of which, instead of being friends of these Pages, you are instead a fan.

As a fan, discussion is often limited to the discussion forums, rather than right on the wall (although many do allow wall posts) and discussions are almost always confined to the top of the Page itself. For example, the Autism Speaks Facebook Page is a place to discuss Autism Speaks, not necessarily Autism in general.

Pages actually are indexed by search engines, such as Google, which means that the information found within may be read by anyone anywhere if they find it in a search.

If you are sharing links to your website, information you feel is important or you just want to get your name out there, this can be quite valuable as their pages may have well established rankings already. If you wish to ease into the community unnoticed, this might not work out well for you.

If it’s information you would like to have, right from the horses mouth (so to speak), then joining Pages is a great place to start as it gives you a direct link to the people that you might otherwise have to wait on hold for hours by phone to talk to.

Of course, you can’t forget the community surrounding the Page of which you join. If you support or believe in a charity strongly, joining their page and discussing that charity and their events/benefits with other supporters is a great way to get started. You can all relate and share common goals.

Autism Pages – http://www.facebook.com/search/?flt=1&q=autism&o=65

4. Events

Events almost take care of themselves as you begin joining Groups and Pages, as any events they hold will automatically be sent to your notifications… however, you may want to know what events are being held without knowing what Groups or Pages to join ahead of time, for that you use the search.

The Events search allows you to search by keyword, just like everything else but it also allows you to drill down which ‘type’ of event you wish to find, such as ’causes’. You can also narrow down the time line, should you be out of town for the next week but want to see what’s happening in 2 weeks.

Events can consist of just about anything that you can attend… concerts, walks, runs, bbq’s, sporting events… you name it. If it’s something you could be at, it’ll be listed as an Event.

Autism Events – http://www.facebook.com/search/?flt=1&q=autism&o=4

5. Search

By now, you should have noticed that each link in each section already takes you to the search, just different parts of it. This really shouldn’t even need to be covered but it does need to be and this is why: most people forget it exists!!

On just about every single page of Facebook that you can visit, there is a white box at the very top with the word ‘Search’ on the left and a magnifying glass on the right.

This little magical box will start auto filling in listings for you as you type, which is very handy, but in this case, I implore you to ignore it. Type in your desire, for example, ‘Autism’ and let it fill in the listings… and then mouse to the very bottom of the list where it says ‘See More Results for Autism’ and click on that.

This is what will take you to the search results page with the filter on the left, which allows you to be more specific with Groups, Pages, Events and more. You can even see what friends are saying about Autism or everyone else (if their privacy settings allow it).

If your favourite Autism group, charity, magazine, etc is on Facebook, this is a great way to find them.

Search – http://www.facebook.com/search/

Conclusion

Facebook is mostly about friends and family and connecting with people you haven’t heard from in a while, but it can be a valuable tool for finding like minded people or even hearing from (or talking to) corporations/charities that you can’t otherwise get that close to.

Never ever forget that search bar is there, use it to find what you are interested in. Also, let your mouse clicks take you forward using the ‘Favorite Pages’ box in the left column.

Many Groups and Pages are able to pick other Groups and Pages to be members/fans of themselves and will list them in a box in the left column for you to see. Naturally, these will be something that should coincide with the Group or Page you are already looking at. You may find others that also share your interests.

Once you are searching and going from Group to Group or Page to Page, you’ll quickly find a lot of people who share your thoughts and feelings and when you do, you’ll either form friendships on those pages or those people will be sending you friend requests to actually begin sharing more of your lives than just your thoughts on a specific topic.

Before you know it, your newsfeed, notifications, messages and even your friend list will be filling up quickly. Add in those Events and you’ll be meeting new people face to face and taking the ‘online’ Autism community to the next level!

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