Tag Archives | community

The public vs private school debate. Has everyone forgotten it’s a spectrum?

By on January 18, 2011 in Autism

There has been a lot of talk lately, due to news stories coming out, about the pros and cons of having children with Autism pushed out there into public schools or secluded away into private schools. Quite frankly, I’m surprised this is even a debate.

Here is my question for all involved… how can you possibly debate one or the other when what we need is both?

Autism is a general term encompassing a spectrum of disorders in a variety of levels of severity… you know this, I know this… these people debating should know it.. right?

If you are debating this topic at a political or journalistic level, please listen to me very carefully.

We need both!

Children that are newly diagnosed likely need the extra hand holding… a child that is so severely low functioning that they’re unable to speak or be toilet trained, they should probably not be in a public school. No, I don’t think the parent has to choose between an institution and home schooling either. A school should be an option… an OPTION. They should not be forced into school and they should not be forced to send their defenceless child to what will likely be a very difficult and cruel time at public school.

Conversely, a child that is speaking, rather intelligent and capable of maintaining at least one friendship at a time will likely benefit from being in a public school. Here, their social skills are put to the test as well as their intellect… also, if they’re high functioning, they won’t be subject to the lesser desired behaviours of the lower functioning children around them in an all Autism school.

A spectrum of children with a spectrum of functioning levels requires a spectrum of solutions… not ‘a solution.‘

There is never one solution for all children when Autism is involved.

I understand there is seldom the money available when having to choose which services will get which funding but I’m afraid you don’t get to choose… there really is not a choice. Parents need both because our children need both.

This is where we need to step it up to another level beyond Autism Awareness and institute a policy of Autism Understanding and Acceptance.

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Let me just make one thing very clear…

By on January 10, 2011 in Autism, Autism vs Vaccines

Let’s talk about vaccines for a minute. It’s not my favourite topic because I feel it’s the one topic that breaks apart the Autism community when we really should be standing up together and supporting each other.

First and foremost let me say, no, I do not believe that vaccines cause Autism. That does not mean that I do not think that there could be situations where a vaccination could trigger an already pre-existing condition (like Autism for example) which would cause a regression.

Do I think vaccines are perfectly safe? No, of course not. Not even their inventors and marketers think they’re perfectly safe. Everyone knows there is a certain % of people that have adverse reactions, allergic reactions, side effects and sometimes, even cause death.

Do I think that the recent Wakefield news means anything in regards to the vaccine risks? No. They simply proved that he lied, fabricated his evidence and findings. It doesn’t prove anything about what vaccines do or do not do though, just that his findings didn’t prove anything one way or another.

I have said since day one that if you have concerns, ask your doctor a million questions and demand a schedule that you feel more comfortable with but please please please do not deny vaccinations entirely.

Here’s the thing, this is where I think that things have gone wrong:

  1. People forget what these illnesses can do and what they’re like.
    Most of them don’t sound so bad, most of them many people had as children themselves and again, weren’t so bad. But you’re remembering and thinking of a very small piece of an entirely much larger picture. These simply “cough and get over it” illnesses do kill people! Some disfigure, some kill.. some simply clog the medical community with thousands upon hundreds of thousands of hospital visits.
  2. People think that an all but gone illness can’t come back.
    If it’s not gone, it can come back. In fact, that’s the very nature of these illnesses in the first place… to spread! It’s particularly ironic in a country like the US where most people complain about the immigration rates that they’d possibly think that an illness that still inhabits other countries could never actually find their way back in.
  3. People forget that there are babies, elderly and other lower immunity tolerance people out there.
    Yes, measles as a kid is rough, but in a senior citizen? Deadly. Whooping cough means a hospital visit for most people, it means almost certain death for a baby. When you or I talk about the illnesses these vaccines prevent, we picture ourselves and our children but in reality, much like the flu, it can kill people that are less equipped to fight it off.

Listen, without vaccines, I believe that by now, we’d probably be seeing a word wide population decrease at this point, rather than our continuing increase.  If nothing else, we’d certainly have far less medical resources to be keeping us healthy. I mean, think about it… how bad is health care where you are?? How bad would it be if a few million people every year were in there with all these diseases that are preventable?

Do I promote getting vaccines? Yes.
Do I also promote safe vaccine schedules? Yes.
Do I promote more research into all of the dangers of vaccines? Yes.
Do I promote more research into finding better and safer ingredients to be used in vaccines? Yes!

The way I see it, if they can pump out a newer and better cell phone every 3 months, they can have new and better vaccines as well.

Don’t ever make the mistake of thinking that I am happy with the way things are… or that I think a certain % of vaccine injuries or deaths is just acceptable. The numbers can always be improved!

But don’t ever think that I am supposed to be out there inciting fear, panic and further division within the Autism community. That simply is not my goal. I understand if it’s not yours either but let’s be honest, many who do hate vaccines, and vaccine makers, do push the boundaries too far. They want others to share in their hatred. They want others to take up a pitchfork and fight along side them.

I am not that person.

Ask for a safer schedule, petition to have more research and safer vaccines created. But never think that not preventing many illnesses is a good way to maybe lower the risk of Autism.

Stop listening to Wakefield, stop listening to anti-vaccination people, stop listening to conspiracy theorists, stop listening to pharmaceutical companies, stop listening to marketers, stop listening to pro-vaccination people… stop listening to me!

Use some common sense, use some rational thinking… do your research, do your reading. Look at the numbers, look at the history. Ask yourself, if it’s all a risk, if it’s all about choosing from bad and bad, why would you opt for denying what you know will be prevented?

Option A prevents X, Y, Z and may cause Q
Option B prevents nothing, so you may get X, Y, Z and still may cause Q anyway
Which makes more sense??

My wife suggested that I make my blog’s tagline “using common sense”… because I pride myself in doing just that. That’s all that I see in this matter, is to use common sense.

Fight for safer vaccines. Fight for a safer schedule. Fight for more safety with our children!!

But never forget that safer actually means taking the vaccines. It does save lives.

This is my official stance on vaccines. I know it’s a hot topic, I know not everyone will agree. Please do not get mad if you don’t. Everyone is entitled to their opinions and as such, I would never think poorly of you for yours. We need to support each other in pushing for the discovery of the true cause, a way to help those that have Autism and for more resources in schools, work, housing and more. Let’s work together.

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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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Make the most of the online Autism community, Part 1 – Twitter

By on September 24, 2010 in Autism

The Autism community is global, there’s no race or group of people that Autism does not affect. The problem of the past was in bringing these people together to compare notes and support each other but these days we have a lot of ways to find each other. In the next few articles, I’d like to bring up a few of them but each one has it’s own distinct group of people and features to use. To begin with, I’d like to discuss the micro-blogging site Twitter.

TwitterIf you’re already familiar with Twitter, skip this paragraph, if not, then here’s the basic concept. Twitter is a ‘micro-blogging’ site in that all you get is a small box that accommodates 140 characters (numbers, letters, symbols) to share information with others that ‘follow’ you. You can follow anyone and anyone can follow you but you also have the choice of blocking people or making your entries (called Tweets) protected, so that only people you hand select can read them. That’s Twitter in a nutshell.

Twitter is a great place to help encourage each other and share small pieces of advice/wisdom with other like minded people, in this case, Autism. But first you have to accomplish two goals:

  1. Find people to follow, preferably people that you’re actually interested in.
  2. Get people to follow you, again, people that actually share your interests.

When you first join, this can seem like a very daunting task and for most, the numbers do not rise very quickly. I am going to share a few tips I’ve learned in getting your foot into the online Autism community.

1. Your bio – Settings

Far too often I find people following me that have a genuine interest in Autism, maybe even are Autistic themselves or having a family member who is Autistic but they do not put it in their bio. That’s great if they feel it’s not that important or not who they are but you know what? I feel no great need to follow them back as they do not fit my interest, which is raising Autism awareness.

If you’re reading this, I am assuming that being an Autism advocate and raising awareness is on your mind so add a little something to your bio. Doesn’t have to be a lot, you can write 3 lines on things you enjoy and tack on “Autism Advocate” to the very end and that will be enough to ensure that anyone involved in Autism will hit that follow button and include you into the community.

It’s a simple thing but often overlooked.

2. There’s more to you than your cause

It’s great that you feel passionately about something but you have to realize, we all do. It is the ‘Autism Community’ after all, and we all have our various issues we feel strongly about. That being said, we would love to hear about you and yours and support you as best we can however we also want to get to know you, and that means you’re going to have to tell us a little more than just what your cause is.

You don’t have to get personal, just share jokes, links to sites you find interesting, tell us something funny that just happened in your house. It’s a little unnerving at first sharing things with people you don’t know but if you want people to relate to you and feel for you… you’re going to have to let us in and not overwhelm us with your passion, or else it will just sound like a chant to us.

3. Conversations – Simple, but sometimes we forget

Twitter is a micro-blogging site and in that, sometimes we feel we should just be making a statement and leaving… but it is also a bunch of human beings on the other end of those tweets that you’re trying to reach. And those people are sharing things with you, what they’re eating, what they’re reading, the funny thing their kids just did… if you want those people to be interested in you, you’re going to have to be interested in them.

Most of the time when we read something funny, we chuckle to ourselves and then move away. In this case, don’t move away, actually hit that reply button and put “That’s funny, thanks for sharing” and before you know it, you’ll have a new follower, maybe even a new friend.

And the next time you share something funny, you’ll be getting responses as well… and that person that responded has their own followers and they’ll want to see what was so funny and then.. their followers will find you!

4. Retweet!

If you find that someone links to some brand new research just released, or some great advice or even just something generally interesting to most people, retweet it. It only takes 2 clicks… and you just know that you really want those people to retweet your stuff. So in this case, you’re going to have to give a little to get a little.

On top of that, you’ll be sharing stuff that others will find interesting and want to retweet themselves. Before long, they’ll think of you as an information source even though you didn’t go get that information yourself. Retweeting is a great way to show that you do your homework, that you care, that you share and that you’re someone valuable to follow.

That being said, there’s nothing wrong with retweeting something that you know very few will like besides you, because it shows who you are, but you have to realize that this won’t be something to entice new followers your way. Sometimes keeping things in your bookmarks is a better way to go.

5. Search + hashtags

Hashtags are keywords with a # in front of them. Basically, it’s just a way of flagging a word such that it becomes very easy to find in the search. For example, searching for #Autism in the search box will return a huge list of people that are sharing great information and advice right now! Find the ones that look to be sharing the best stuff and follow them. Chances are they’ll follow you back. If not, no big loss, they’re providing you with great information to retweet or use in your life.

Conversely, if you tweet about something important, such as Autism, put a # in front of it to ensure that others are finding it. It takes a little practice to know when to use it, what words to use them on… but if you have a few conversations and browse enough, you’ll get the hang of it pretty quick. Think ‘topics’ when you think of what to hashtag. Some examples: #Autsim, #ASD, #ADHD, #parenting

6. FollowFriday

Now that I’ve mentioned hashtags, one hashtag is extremely popular on Fridays called #FollowFriday. This tag is not really used for searching but for 2 other reasons. One is to give a shout out to people they follow that they enjoy reading and two is to recommend those people to the rest of their followers.

For example, if I find your tweets to be very informative and/or entertaining, I may put your name into a tweet with a #FollowFriday hashtag which tells others that you have something valuable to offer and that they should consider following you as well.

If you follow steps 1 – 5 (and throw in your own personal brand of personality), then people will be compelled to recommend you the next Friday that rolls around and gain you more followers.

But keep in mind, this also goes both ways. If you never recommend anyone, chances are you won’t be getting many mentions yourself. Most people won’t take it personally but they still won’t be as keen no recommending people to their followers that don’t share the kindness.

8. Remember, we’re all human.

Seems a little silly but often we forget that the weird names with weird tweets are real human beings out there, with real lives, with real issues of their own. Those people sharing their lives and issues are what draws you into reading about them and you sharing yours will be what draws them into yours.

Try not to offend, we all share something in common in the Autism community but we all also have our own view points on various things. Agree to disagree, try to keep an open mind and read what they have to say as something they believe. Right or wrong, your opinion or not, real people have their reasons for thinking how they do. And if you want them to respect you, you have to keep that in mind.

Conclusion

Twitter is a great way to become part of the community, get and share information, advice, knowledge, experiences and so much more. It can be slow going at first but keep in mind that when you get higher in numbers, the speed also picks up. If you treat people well and share (to and from), then before you know it, you’ll be struggling to keep up with it all and loving every minute of it.

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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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