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The Happy Birthday Colin fan page vs the ghost of Christmas future

By on February 19, 2014 in Autism

I’m sure you’ve heard of it by now but if not, there’s a Facebok fan page out there called Happy Birthday Colin that a mother created for her son to prove to him that there are caring people in the world. To best explain it is to use her own words from it’s title status:

I am Colin’s mom, I created this page for my amazing, wonderful, challenging son who is about to turn 11 on March 9th. Because of Colin’s disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don’t like him. So when I asked him if he wanted a party for his birthday, he said there wasn’t a point because he has no friends. He eats lunch alone in the office everyday because no one will let him sit with them, and rather than force someone to be unhappy with his presence, he sits alone in the office. So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that would be better than any birthday party. Please join me in making my very original son feel special on his day.

It’s a nice gesture, a well intentioned thought. And the response has been incredible. Their fan page just hit over 2,000,000 likes as of the time of this writing, which is more than most Hollywood celebrities get. They also get a lot of mail delivered to their local post office, again, more than most Hollywood celebrities. Naturally, this will be rather short lived as he’s not a Hollywood celebrity and his birthday is just one day and basically, his 15 minutes are finite.

However, as it circulated through out the social media world and the news media, many people took up arms and went on the attack against this well intentioned thought. The idea that a mother would make her son a celebrity based on the fact that he has no friends is going to leave a mark on his soul that can never be erased. The fan page might be removed one day and his 15 minutes will be up at some point but those news stories will live on and the history of what she did and what was said will live on forever. And he’ll have to live with that.

GhostOfChristmasFutureScrooged400Those people refuse to ‘like’ his page. They have no problem though with blogging and writing about how terrible the mom is. They have no problem with predicting a very dark and grim future for Colin.

I have a few questions though. What sort of rosey, magical rainbow paradise are you picturing this kid is going to live in when he’s older if only this fan page didn’t exist? Do you honestly think the bullies will just go away as he gets older? Do you honestly think that he’ll just one day start making all kinds of friends for no real reason other than him being older?

Don’t get me wrong, yes I think people will find this page or it’s story in the future and yes, some will likely even laugh at him for it or maybe even use it against him in some way. But do you honestly think people that would do be so mean really even need it? Do you honestly think that a bully, wanting to hurt someone for no other reason than for the enjoyment it brings them to make someone suffer, would take the time to surf the web and drum up decades old info to use on someone?

Let me put it another way, if this mom hadn’t done this, do you honestly think that a bully would think to himself “well, I didn’t find anything about him on Facebook, I guess I just won’t bother him.”?

No, a bully is a bully and they’ll make something up if they don’t have the ammo they need. A person that would laugh at someone else because of something embarrassing his mother did to him as a kid is a person that is going to laugh at you for no good reason at all. A potential boss that decides on whether or not to hire you based on stuff from your childhood? Not worth working for. Anyone that would judge you because you had a rough childhood or worse, because you had a mom that did something so incredible for you even if it was embarrassing? Those people aren’t worth knowing.

You are not the ghost of Christmas future anymore than I am. However, there are a few things that I do know.

1. Parents embarrass us. It’s just the way it is. It’s like it’s their job. They hug and kiss their kids in public, they wear old outdated clothes, they don’t understand the latest slang or music and they go over the top to show their love sometimes. It’s what parents do. No, not usually to the tune of 2,000,000 Facebook fans but honestly, to a kid, does it feel less embarrassing when your mom shows people a picture of you in your underwear or naked in the tub?

2. Bullies don’t disappear just because your parents shelter you from them. This mom could stay out of this kid’s life completely but he’ll still have no friends. He will still get bullied. She could be the most perfect parent on the planet and do everything right and he’ll still have no friends. The bullies will still be there. During his birthday, as he gets older and later in life… whether she makes a Facebook fan page or not, the bullies will be there.

Listen, the phrase “it gets better” is true but it’s not because our parents hide us better or because the bullies or bad people go away, it’s because we grow up. We begin to understand that those bad people have no power over us and that it only ever felt like it did because we allowed them to have that power. It does get better but not because of anything anyone else does, it’s because we just won’t take it anymore. We get stronger.

Telling this mom that she did something terrible by doing this? That makes you the bully. Telling this kid that the bullying doesn’t stop and that he’ll have no friends in the future? That makes me the bully.

But whether his mom embarrasses him, or whether you rip into her for it or whether I tell him the future is still pretty sucky… none of that matters. It’s on Colin. Just like it was on you, me and everyone else. We need to be the ones that love our parents for embarrassing us like they did because of just how much they loved us. And we’re lucky to have that. We need to be the ones to stand up and say that those bullies are wrong and worthless and have no power over us. We need to be the ones to say that it’s going to get better because we say so. Not anyone else.

You can judge this mom all you want but don’t do it from your pedestal of mystical foresight as if your best guesses of what the future will bring are some cold hard facts when you know full well that you hate it when other people do that to you as they dissect your every parental decision. Don’t be a hypocrite. Don’t be the person you hate when this stuff happens to you.

Finally, consider this.

What if your message hit home, not just with this mom but with every parent every where and collectively we all stopped doing every single “well intentioned” thing we could do for our children for fear of what a bully might say later in life.

What then?
Did you win?
Or did the bullies?

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When raising Autism Awareness gets out of hand and becomes something else

By on August 25, 2011 in Autism

I’ve been noticing a disturbing trend lately…. Autism Awareness.. run amok!

Autism awareness is a great thing, it’s a wonderful thing…. it’s a necessary thing.
But as we all know, too much of a good thing can be bad for you.

Here are just a few instances where well intentioned Autism Awareness becomes more of a nuisance than a good thing.

towerThe Share-o-holic

This happens all over the internet but the two most obvious places I see it played out is on Twitter and Facebook. This is what it looks like:

  • Twitter: Instead of tweeting a link or message, they mention every single person they can find on Twitter and tweet their link or message, over and over, to each person, until they get blocked by Twitter for spam. Often, these all come with a request to retweet it.
  • Facebook links: So excited about a blog post or someone writing about them, they race to every profile, fan page and group that they can find on Facebook to share that link. Thousands of shares later, they do it again the next day.
  • Facebook bios: Having written a cleverly worded bio about who they are, what they do or what they offer, they hit every profile, fan page and group that they can post to and repeat it again, word for word, weekly or more.

This constant repetition is frustrating enough but seeing it daily or weekly is enough to make me want to unlike those fan pages, remove myself from those groups and so forth… all because of one person. And I’m all for Autism Awareness! Imagine what others must think.

The News Source Replicator

Being aware of what is in the news is paramount to being aware of what’s happening in the Autism community but also in being aware of what may benefit you or your children. Some new information may shed some light on things close to home, some new therapy may be just what you need.

That’s great!

However, what we don’t need is for people to automate their Twitter account to just pull from a news source on Autism.

If their entire Facebook feed is news stories and never an actual conversation piece or anything, no one is reading.

If they login to Google+ once a day just to hit the share button on every single Spark available that day and then they’re gone after… people will remove them from their circles.

Listen to me carefully, if all you have is news… no one is reading. You’ve blown it. Autism Awareness is your goal but not your achievement.

Alienating Your Own Kind

Oh this one scares me… I just shake my head…. violently. I am just so dumbfounded.

Recently (late July to be exact), Temple Grandin created an actual Facebook profile. Not just a fan page, but a profile. So she could have friends and everything.

It was quite impressive to see how quickly she got to 5000 (the max). It’s a true testament to her and her work.

However….

For the last 2 weeks, I’ve watched update after updating of Temple Grandin joining an Autism group on Facebook. Now, groups don’t work the way you might expect. Temple Grandin isn’t actually joining these groups. The groups are adding her.

The way groups work on Facebook is the group can just add anyone it wants and it’s up to those people to opt out.

Now, think about how frustrating this must be when it happens 10 or 20 times a day.

Granted, it’s mostly someone representing her and also, she’s a very kind woman and probably doesn’t really mind being in all those groups however at the same time, it’s really quite rude of so many people to do this to her. Her Facebook stream must be simply filled with group posts. Insanely filled.

Is this really how we treat someone we respect so much? We force hundreds of Facebook groups on her until she finally decides she’s had enough and leaves Facebook behind?

What exactly is it we’re doing?

Are we really raising awareness when we do this? Are we really “sharing our message” with others?

Or are we trying to ram our own need for attention down the throats of others?

Because sometimes, I have to wonder.

And if you know me, you know that I’m all for raising awareness. For doing more than that! But this is not the way to do that.

Making people want to block you, unfollow you, leave the places they used to enjoy… all just to get away from you.. what is it you’re really doing?

Broadcasting

In the social media world, this is called broadcasting. This means that all you do is send message after message, link after link, story after story and you either don’t, or very seldom actually interact with anyone. You take nothing in.

If you treat social networks as your own personal radio station, you’re doing it wrong.

First of all, no one listens to a radio station that only has one song.
Secondly, people  looking for social interactions don’t turn on a radio for it.

I’ve often said that Autism Awareness is a passion for some people but the problem is that passion can be blinding sometimes. In an effort to share the message with the world, you become obnoxious and the world becomes annoyed and tunes you out.

When that happens, you don’t just hurt yourself, you hurt all of us for all of our messages become a little less powerful, a little less heard.

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Autism and Facebook – A how to on Friends Lists

By on February 23, 2011 in Autism

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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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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Social Media Could Not Have Come at a Better Time, Let’s Use it For Autism!

By on June 23, 2010 in Autism

It’s sadly ironic that a disorder affecting 1 in 110 children (by current estimates) can leave you feeling so alone. How can a world of almost 7 billion people have around 63,000,000 Autistic people in it and still leave us feeling like we have no one to talk to and no one who will understand what we’re going through? Mathematically, it seems ridiculous.

But the truth of the matter is that we do feel alone, we do feel isolated and we do feel like no matter how hard we try, we just can’t get people to understand what it’s like. More so than that, we feel lost as there are far too few programs, organizations and professionals for us to talk to.

Luckily, for many of us, we have already had a fair amount of experience with the internet and have grown accustomed to seeking out information for ourselves, some are even adept at researching for more information, or keeping themselves up to date on current trends. But it’s only been in the last 3 or 4 years really that our greatest tool has been brought to us, social websites!

Now, more than ever, we can connect and share stories and information with each other one on one or in groups. Facebook and Twitter are my personal favorites and I have received an overwhelming amount of support from the wonderful people I’ve found there.

I highly recommend using these and many other social sites as tools in your quest to add more information to your arsenal, and even to help gain that extra support, motivation and inspiration you may need to get you through some of the tougher days.

I do have a couple words of warning however, from my own personal experiences.

  1. Beware the temptation to win the popular race. This is especially tempting on Twitter where you see that # next to your Followers indicator and you just want it to go up and up and up. The truth is, you’re seeking knowledge and information that is extremely important to you. What you need is a community of followers and those you follow that will give and take from you the strength and information that will keep you all going. It’s not a popularity contest, as many on these sites will have you believe.
  2. Don’t let anyone “TELL” you what to think. It’s very easy to see a Facebook fanpage with hundreds of thousands of fans, or a Twitter account with hundreds of thousands of followers and think that they must know what they’re talking about, so what they say is obviously right. I think, in most cases, they would never do that and would only do their best to advise or share information and let you make your own decisions. But there are some out there who try to make up your mind for you, and try to ‘convince’ you to think the things they think. Remember, no matter the ‘popularity’, these are just real people out there like you and I, and they have no right to tell us what to think.

Don’t tell yourself you’re a nobody and shouldn’t contribute, because all of the people in the community are created equal. Perhaps they have done more research than you have, perhaps not… but they’re real people. And as a community, I’ve never once felt like I wasn’t appreciated for giving my two cents. It’s been a truly remarkable experience actually, intimidating at first but as I started to receive welcomes, feedback, support… I found that these places aren’t so bad.

I always pictured them as prank places for kids, you know… where teenagers go and talk about the latest pop stars and share dumb jokes but in all reality, there are some very very intelligent people, extremely supportive people and an absolutely amazing community that you can be a part of.

I really do hope you take the plunge, it’s so worth it.. and when you do, visit my fan page: http://www.facebook.com/autismfather
Be sure to scroll down on the left hand side and view the “Favourite Pages” section to find some truly wonderful fan pages full of information, people and stories.

Also, visit my twitter lists as they are filled with people just like you who would love to hear about your experiences, and may have advice or may even learn some things from your story themselves:
http://twitter.com/autismfather/autism-parents – A list of people who have at least one Autistic child. These people know and understand what you are going through.
http://twitter.com/autismfather/autism-resources – A list of resources where you can get the latest news, research, events, charities and more stories.
http://twitter.com/autismfather/amazing – This list is called ‘amazing’ because that’s the only way to describe the people on it… they have Autism, and they share their experiences on Twitter.

1 in 110 is staggering… you are most certainly not alone, not any more. Join us and become an active part of the community. Every person that does makes it stronger.

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