Archive | October, 2010

Communication Shutdown, Why I’ll be online Nov 1st.

Ok so, I’ve argued with myself about whether or not I’d ever even discuss this topic, much less write about it but today I’ve volunteered my time to be a part of a 24 hour “shout out” on November 1st. It’s for this reason that I think it’s only fair that I explain why. Also, doing so just days before the actual day will help with anyone wondering if I am discussing this just for search engine traffic or so forth.

The Premise

no communication

No Communcating Nov 1st

The idea behind this ‘event’ is that people should not use Facebook or Twitter for the entire day of November 1st in an attempt to experience what it is like to lack the communication ability of those with Autism.

You visit https://communicationshutdown.org/ and donate some money, they send you a program that you install and it will update your Facebook and Twitter accounts to announce that you are not going to be there that day in the name of Autism.

You spread awareness, you experience the lack of communication, someone gets the donation, the world is happy.

Speaking for those that can not speak for themselves

The whole idea of Autism Awareness and Advocacy is that we speak out for those people/children that can not speak for themselves. As such, it makes very little sense to silence ourselves for them.

Also, I’m not even Autistic but even I feel it’s pretty insulting to think that not visiting a couple of websites could ever give you any insight into what it’s like to have Autism. That’s like saying that because you were in chess club, you know what it’s like for children in bad neighbouurhoods to get mixed up in violent gangs.

Not saying anything is the new “what’s your bra colour”

Remember last year when Facebook women started putting their bra colour into their status as a fun little “shhh… don’t tell the boys” game? And after most said it was childish and stupid, they attached the Breast Cancer Awareness mantra to it and suddenly it became a worthy cause to participate in.

The problem was that most of the guys and even a very large number of girls simply never got the message. The problem with “shhh” is that noone knows why you’re “shhhh”ing unless they ask and really, who cares enough to ask? No one.

So this communication shut down will very likely become the next viral campaign that totally went by most people’s attention spans without a second glance until some other day when they caught a news article or someone says something off handed and they go “oh! That’s what that was about?”

Flawed target audience

If this is truly aimed at giving people a taste of what it is like to have Autism, why would I need this? My son has Autism. Many of the people being asked to participate have Autism themselves. Do we really need this exercise to experience it?

It seems to me that this needs to be focused on the general public more than those of us that are already advocates or that already have Autism. It’s a great starting point as we can reach out to more people than they could alone but obviously the approach was flawed. We should have been given tools (banners, ads, market material, links) to prompt readers rather than asking us to just donate like any other person.

Donation Information

So the site lists a rather impressive list of charities/organizations which will be receiving these donations… it even promises that your donation will go to a place that is in your country. This is impressive. View partners.

What is not impressive is that we have no idea who the people are putting this on, nor how accountable they will be. Will we see records and breakdowns of where the money went? Will we get autobiographies of those involved? Do we know what will be funded with the money?

Furthermore, why can’t we just donate to the charity/organization directly and keep on Tweeting and Facebooking? Facebooking? Is that right?

Also, why can’t we just have the program to update our accounts and post about our attempts at Autism Awareness without having to donate? What if I want to participate because it’s a worthy cause and want to get the experience but can’t afford money to donate because we are living with Autism ourselves and could probably use that donation money for our own family?

The Alternative

Some blogs are pushing for an explosion of shout outs, a total opposite to a communication shutdown. They’ve even come up with some tags #AutismShoutOut to use on Twitter to show your support.

To me this makes a lot more sense but shouldn’t this be done in April? Autism Awareness month? Why is this being done in November anyway?

I don’t think I can endorse this approach either really, since it will likely get quite annoying and/or repetitive after the first few hours. But it sure does beat not saying anything. Cause no one will know why and you can’t tell them!

What I am doing

As I said in the first paragraph, I have decided to participate in “Communicate and Educate Speak out and Speak Loudly” 24 hour chat held by http://thecoffeeklatch.com/ on twitter: @TheCoffeeKlatch

I will be co-moderating from the 4pm to 5pm EST hour, they’ve organized that there will be moderators for an entire 24 hour period from 9am to 9am. This means that information, questions, advice, myths, stories and more will be shared for the entire duration.

If this isn’t the opposite to not communicating for 24 hours, I don’t know what is.

And so, I’ve decided that since I agreed to become a part of it, I should explain why I made the decision. Not that I owe it to anyone, but that I feel this decision could raise the question.

My suggestion for you?

I have three.

There’s really nothing wrong with taking part in the communication shut down. It will raise awareness, they will get donations to good charities. If you wish to do it, good on you. You’re doing something great for the Autism Community.

There’s nothing wrong with not taking part in it either. There’s nothing wrong with seeing flaws in the plan and doing the exact opposite. Speak out, speak loud and speak proud. Raise awareness as you see fit. If you do wish to take part in the chat, in which I will be a part of, simply add #tck to your tweets or use their custom chat room which will help you streamline the conversation much easier: http://tweetchat.com/room/tck

Finally, there’s nothing wrong with just going about your day as you always have. Talk Autism, talk sports, family.. anything and everything. You are involved already, you’re already doing your part. Feel proud in that. You should.

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Autism siblings – living in a different world

My son Cameron (with Autism) is 5 now which means that we’re starting to get him into programs that will benefit him, such as dance, bowling and gymnastics. The last two week-ends was gymnastics.

The program putting this on for the Autism children didn’t expect a big turn out and so they invited siblings along as well, which is great for us because Cameron’s little brother Tyler (without Autism) is just about 3 years old and eager to do what his big brother does.

It turns out that the community was quite eager for this program because instead of 8 children, they got closer to 25. So they had to do some quick shuffling and splitting into groups and such. However, this also meant that they had to tell everyone that siblings are no longer welcome.

Now we’re faced with a 3 year old that absolutely loves gymnastics and asks every single day to go back and yet, he can’t go back… but his older brother can.

It’s rough as a parent when you have to break a little heart.

apples and oranges

Comparing my boys can be like comparing...

But I know that this is just the first of many many times that this will happen.. because Cameron has Autism and Tyler does not. This means that, for the most part, the rest of their lives will have this kind of separation. One or the other will almost always be excluded and it will always be hard for them.

One thing we are lucky about is that we found a school for both Autism students and regular students. They’ll be on different floors but in the same school.. and being more than 2 years apart, they wouldn’t really see much of each other anyhow. But it’s still great knowing they’ll be in the same school anyhow.

For many parents, that’s not the case however. Their children get split up and they have to choose between therapy programs, such as ABA, or home schooling. Some even are forced to put their children with Autism into regular school where they have to fend for themselves as best they can.

In any case, this usually results in even more separation…. where siblings no longer get to be together or share in their experiences.

Now, most parents would tell you that it’s rather normal, simple age differences will do that, interest differences will do that… so on and so forth. And for the most part that is true. But until you actually have one child with a disorder/disability and another without, you never truly realize just how much of a huge difference it can make.

Yes ages and interests put children on different paths but not nearly as much as you might think until you are forced to have them doing different things at different times.

And so begins a long journey of disappointments and heart aches where two brothers will forever be worlds apart. The saving grace being that at the end of the day, they’ll return home to the same house with the same family and share in the things that they both enjoy here.

One day big brother will look after his little brother and little NT brother will look after his big Autistic brother and despite being in two different worlds, they’ll be there for each other. At least, that’s what I hope for.  But until then, they need to learn to watch each other go off and do something that they wish they could do too.

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My tips for using FollowFriday effectively on Twitter for Autism

FollowFriday is a Twitter tradition whereby, every Friday, people ‘recommend’ other Twitter members to follow. For example, if I put #FollowFriday (or #FF for short) and the name of a Twitter member, that means I recommend that you follow them too.

I put quotes around ‘recommend’ because it’s evolved to become more of a ‘shout out’ thing, where I’ve noticed many people just list celebrities/influential people, or friends/family.

If you are involved with Autism in some way, I want you to hear me out because from here on out, I refuse to give shout outs… and I really don’t want to offend anyone along the way.

Autism, like any other cause that we believe in, is very important and very serious and it’s for this reason that, even though I happen to be quite proud of my sense of humour and ‘go with the flow’ nature, I take some things quite seriously. This FollowFriday tradition is one that I’m going to take more seriously from here on out.

follow friday

#FollowFriday or #FF

The Real Value

There is a great site (FollowFriday.com) which actually ranks people based on the number of FollowFriday mentions they get. That’s not what is important. What is intriguing, to me, is that they do NOT count anyone’s mentions if they mention more than 50 people.

The reasoning for this is quite brilliant, in that, if you are recommending more than 50 people to follow, you don’t really mean it. You could have a million people in your list and you should still be able to narrow down real genuine serious recommendations for others to follow to less than 50.

This gives your recommendations value. REAL VALUE.

If someone recommends 3 people to follow, and they have a list of 20,000 people… those are 3 very special people! Wouldn’t you agree? They have a lot of value to be singled out and displayed to the other 19,997 people.

If they were just 3 people included amongst 50 other mentions, their value not only diminishes but disappears completely since not one single person on the entire Internet would sift through your 50 mentions and try to find the ones of real value.

In the case of Autism, or any cause, this is especially important and critical. If I go recommending 20 people that are funny and 5 people that are genuinely great information sources on Autism, the message will get lost and the value gone.

Making your choices mean something

It all comes down to building a stronger community, that doesn’t mean that I intend on excluding people. Don’t get me wrong. I would love to FollowFriday my entire list but I know full well that it will mean getting NO CLICKS instead of more. As I said before, not one person would spend the time weeding through the mess to find the value. And so, it would accomplish nothing.

Carefully selecting the truly worthy members of your list and recommending those few will ensure extra exposure, added value and more follows which will help to build a stronger and even larger community.

It is for this reason that I have decided to drastically cut down the number of FollowFriday mentions that I will make each Friday. I really do not wish to offend anyone by not mentioning them.

There are simply far too many people that I actually do want to mention. But I can’t or else I do more harm than good.

Some tips or guidelines, not rules

In summary, I have made this list of tips for effectively using the FollowFriday tradition in regards to the Autism community:

  1. Limit yourself to a finite number of people each week. Maybe 10? 20? Lower if possible. And stick to it. It forces you to be extra picky.
  2. Make lists, use them, one per week. Lists such as parents, charities, information, merchandise, etc… you can visit one list each week and pick the top members from them to FollowFriday. This way, each week you feature categories of members, allowing you to cover more people over time since you likely won’t repeat a mention for several weeks.
  3. Keep a notepad txt file on your desktop and keep tabs on someone you’ve noticed with really good information, especially inspiring, good blog posts, etc for that specific week. Give that person a mention that Friday. They’ve worked hard, they deserve it. Erase after and start it fresh on Saturday.
  4. Pick people that your followers would be genuinely interested in. Not just family or friends. They might be upset that they recommended you and you didn’t return it but if you want this to actually mean something more than giving a friendly shout out, they’ll understand.
  5. FollowFridays don’t have to be Friday exclusive. It’s nice to be included that one day, but it means even more to get a random “Wow, you really have to follow @twitter_member, they know a lot!”. It means more to that person, it means more to your followers.
  6. If you are making more than one tweet for your mentions, include a one-two word descriptor to tell people who or why you recommend them. Most of my FollowFriday mentions look like this: “#FF #Autism Charities: ” or “#FF #Autism Parents:”. This allows people the ability to sift through them and look for the people they’re most interested in.
  7. It’s not a competition! People put value on the # of followers that a person has but I’d gladly put my 1000 followers up against someone else’s 10,000 because almost all of mine discuss Autism. This gives my followers a lot of extra value to me. They mean everything to me since Autism is my world (at least on Twitter anyway).
  8. Since it’s not a competition, don’t use those #FollowFriday list building tools. Some are clever and try to find others that you’ve mentioned a lot or that have mentioned you a lot… but they can’t really judge true value. They can never replace your own ability to place a desire to share a follower with the world.

Think about it as a party and you’re making introductions. You don’t introduce random people to random people and you don’t introduce a person to other people when you know those other people won’t really want to meet them.

You introduce someone to people when you think they will have a mutual interest in each other.

So introduce me to someone that you think is someone that I’d want to follow and I’ll follow them. But don’t throw a ton of names at me because I won’t remember their names later.

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Is IBI right for my child? What is IBI?

Intensive Behavioural Intervention (IBI)

IBI is the application of the science of ABA in an intensive manner. As a general rule, it is done for a minimum of 20 hours per week no matter the severity of the child.

This comes up right now, for my family, because it was almost 3 years ago that we were told that my son, Cameron, has Autism and it was then that we were told that he would be put onto a 3 year wait list for….  drum roll…. IBI.

TherapyThis is a big deal. One to One IBI therapy is the only intensive therapy funded by the Government of Ontario for children with autism. This means that it’s really the only option for parents that don’t have a lot of extra money lying around for therapy.

As part of the program, the child would be removed from their school for about 2 hours a day and put into a very intensive therapy session focused on key areas of development, ranging from being able to sit up to spelling out words on their own. The questionnaire was something akin to registering for the space program. A few hundred questions later and you’re put onto a waiting list.

Our 3 year waiting period officially came to term this month and we found ourselves at a cross roads of frustration as we are forced to weigh the pros, cons and opportunities.

3 years ago we found ourselves with a non-verbal child, not toilet trained, unable to do most things that a 2 year old should. His diagnosis put him at moderate – to – severe PDD-NOS. Finishing the check list found us answering mostly “no”s to everything and feeling very discouraged.

At this point, we took it upon ourselves (my wife mostly) to learn all we could learn about IBI and ABA… with every appointment, therapy session and meeting we had with people, we took away binders, books and pamphlets of information as well as all that they could ‘teach’ us.

The thing I find most frustrating, and what I’ve been repeating since the very beginning is… if a teacher, school, program, therapist, company, organization or government doesn’t offer all that you want or need, you as the parent MUST MAKE UP THE REST. Do not rely on anyone or anything to provide for your child all that you need.

So, armed with all the information we could get, we began our own IBI/ABA program here at home… population 1. We worked (99% my wife) with Cameron every single day, even if only for a few minutes, an hour… what ever, we worked on his numbers, colours, shapes, holding things, using things…  all that IBI/ABA would have had him doing.

I introduced the Nintendo Wii (Mario Kart specifically) because it had just one button to press and just a turn of the controller and that’s it. It greatly advanced his gross motor skills.

All of this found Cameron progressing more and more and more. It wasn’t easy and certainly didn’t come over night. It also went hand in hand with everything else we could learn and try… such as the gluten free diet.

2 years later, Cameron was accepted into a wonderful school that has ‘regular’ children on the main floors and the basement dedicated to Autism. In a class with only a few others and many adults, he was further given the guidance and support he needed to grow and learn even more.

And now, he’s in school for his second year (senior kindergarten) and is now spending many of his days with the ‘regular’ 1st and 2nd graders because not only is he smart enough for it, but he’s getting to be social enough too!!

IBI came calling once Cameron’s name came up and we had to weigh our options. Would he benefit from getting more of what we started so long ago, or would he benefit more from the social life that he now had in school?

First, let me tell you, a lot has changed in 3 years. Northern Ontario had recently made a rather drastic (in my opinion) change to their program and now insist on full time IBI sessions, which means no more 20 hours… it would replace school completely!

The children in the IBI program here in this city are all quite severe and the only children that could possible be on the same level as Cameron are 9 and 12. Cameron would NOT relate to them at all.

All of this, however, didn’t impact our decision nearly as much as what my very clever wife had decided.

You see, this school that Cameron is in is so awesome that they have a 2 way mirror in it, such that any parents, at any time, can enter a private room and watch their children in the classroom without anyone knowing.

So she had the IBI lady come to the school and join her in that room to witness Cameron’s progress, they brought the checklist.

This time, all of the “no”s had become “yes”s… Cameron had surpassed all that IBI had to offer for him and in fact, would hold him back as he’d lose all of his social interactions, not just with other children with Autism, but with other children without Autism.

And so, at the end of their observations, even the lady from IBI had to agree that Cameron’s best place was in the school. That there wasn’t much that they could do to help him progress since he’s already surpassed what they cover.

That was what we really wanted to hear… that we were making the right choice and furthermore, that we had made the right choice all along.

Now the question is, is IBI or even ABA for that matter, right for you? Well, I guess that depends on what you would get out of it and what you wouldn’t. Also, you must consider if your child isn’t getting something out of it, can you do it? Can you find a way to compensate for it? Are you dedicated enough? Resourceful enough? Determined enough?

If your little one needs strict guidance and personal development, maybe IBI is a good choice. If your child need a social setting, then maybe not. For us, we feel that if we took Cameron out of school and put him in IBI for any period of time, it would be a huge set back once it came time to re-introduce him back into the social scene. He’d lose that ability to wait his turn, put up his hand, follow directions and seek out people on his own to play or work with.

Only you can know for sure, questionnaires and observation can only take a professional so far. You need to know how much further you and your child can go.

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Bullying: A real problem, some answers

I haven’t written about bullying because I’ve been fortunate enough to have not encountered it yet with my children and even if I had, I certainly wouldn’t know much about what to do… so I’m definitely not an authority.

But today, on #SpiritDay (October 20th, 2010), we wear purple to put an end to Anti-LGBT bullying and bullying in general. So I figured today is a great day to do more than just wear purple.

It’s time to get some information.

Sonia Sharp, an expert on bullying, said in a speech for Brighton and Hove Education Authority

  • 1 in 2 students experience occasional bullying during any school term
  • 1 in 4 students in primary school are bullied more than once or twice at least in any term (so they are more than twice as likely to be bullied as those in secondary schools)
  • 1 in 10 in secondary school are bullied more than once or twice at least in any term (some research says one third of secondary students are bullied during the course of the school year)
  • 1 in 10 primary aged students are persistently and frequently bullied – possibly every day

Some facts from other experts:

  • Between 15 and 25 children every year commit suicide because they are being bullied (there may be more we don’t know about, and many more than this attempt it because bullying has made them so unhappy.
  • More than a quarter of students get threats of violence whilst at school, and half of these threats have been carried out.
  • Attacks on boys accounts for 75% of these incidents.
  • Around 10% of children have missed school because of the violence.
  • Up to 40% of secondary school students feel that their teachers are unaware of the bullying which goes on.
  • About 17% of calls to ChildLine are about bullying. For five years running it’s been the most common reason people call
  • More 12 year olds call ChildLine about bullying than any other age group

Source: CoastKid

Bullying comes in various different forms. It doesn’t just happen at school, it happens in the workplace, social settings in general and even online.
The worst is racial, discriminatory and of course, in the case of the Anti-LGBT movement today, bullying based on sexual preference.

Norwegian researcher Dan Olweus defines bullying as when a person is “exposed, repeatedly and over time, to negative actions on the part of one or more other persons.” He defines negative action as “when a person intentionally inflicts injury or discomfort upon another person, through physical contact, through words or in other ways.”

I don’t have the answers, but I know that sitting around saying that I don’t have the answers is certainly not helping. So instead, I found some great sources and am sharing them now.

Bully Free Zone

This is a Bully Free Zone!

Websites

Phone

  • 1-800-4CHILD
  • 1-800-273-talk

Please share these resources and for goodness sakes, please USE these resources if you need to. Bullying can happen to anyone, it’s not your fault if it happens to you. Recent stats puts unreported bullying at over 2/3 of cases. That’s tragic.

What is more tragic is when bullying leads to depression or worse, suicide.

You are not a victim so stop being one. And don’t let people you know be the victim either. Pick up the phone or a keyboard and get some help. It can be stopped but you have to stand up and take a stand for that to happen… and you’re worth it.

PS, if you have more resources for your country or just in general, please feel free to include them as a comment to this article. The more information the better.

PPS, please don’t shy away from blogging about bullying today, even if you don’t know much about it. It’s an important issue that people need to talk about. Only then can it come to an end.

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