I refuse to be your saint

When I started writing about autism, I came under heavy criticism with each word I wrote from everyone and everywhere. I had to make sure that each word was the right word, each opinion was as least offensive as possible, that each fact was verifiable and that anything I could say about me or my situation was in no way inferred to mean that it’s how it is for anyone else.

Since starting my Minecraft server for children with autism (Autcraft), all that changed. Now, I can’t just preface the things I say, I can’t just claim things as my own thoughts, I can’t just choose the right words… now I have to aspire to sainthood because apparently anything less will result in the harshest of criticisms.

I thought that by starting a simple little Minecraft server for autistic children, people would simply be appreciative and let their children play and I could just run it while continuing on with my life like usual but that has not been the case. Now my every word, thought, decision and action are put under a microscope and analyzed and judged.

It sounds extreme but trust me, those that work with me on the server have seen it. I can no longer just be me. Sarcasm? Nope, someone will take it wrong. Humour? Nope, someone won’t laugh.  Opinions? Definitely not anymore.

Here’s the thing, if I say or do one wrong thing, no matter how innocent, this wonderful world of the Internet has the ability to take that, twist it, mold it and grow it into something absolutely incredible and have people wishing for your death. Again, sounds extreme, but it’s true.

Normally, in the past, this wouldn’t have concerned me because if people hate me for something trivial or misunderstood or what ever, I wouldn’t care. I don’t know them, I don’t see it when I walk away from the computer, it doesn’t affect me. For the years of writing my blog, this approach has served me well.

Autcraft is entirely different though. Autcraft is a safe haven for children with autism and it is very much needed by many of these children. Their parents too. They love the place. They thrive there.

So now I have more to protect than just my own reputation. Now, I have a community to protect. I have a support system to protect. And every single time I say anything anywhere now… that community is put at risk.

I don’t think many could understand the extreme pressure that puts on me to be… well, perfect, somehow. If I say one insignificantly tiny thing wrong and someone takes that to use against me, it’s no longer me that comes under attack but Autcraft itself.

The children start to doubt their safety. Parents stop letting their children play there. The children start to panic and feel scared.

I’m an autistic adult and I have 2 children, one with autism. I don’t smoke, drink, do drugs… I don’t even swear. I started a Minecraft server for kids with autism simply because I want to help. And every day.. every single day… I have to be a saint… I have to do better than the best… because one wrong word and it’s those children that suffer. They shouldn’t have to be scared.

Well, I’m here to tell you that it’s just not possible. I am a very nice guy, I do my best to do no wrong, but I just can’t be your saint. I just can’t be as perfect as it seems the world wants me to be.

All that I ask is that people stop forgetting that I’m a human being and start recognizing that I’m just a guy who wanted to do something nice. The server is doing great, the children are happy. Please don’t hold them responsible for any issues you have with me not being perfect.

I refuse to be your saint.

I just can’t take that sort of pressure.

I am not a saint

Nelson Mandela

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10 things I’ve learned from running a Minecraft server for children with autism

It wasn’t that long ago that I registered a domain name, opened up a shiny new Facebook page and Twitter account and announced to the world that I had started a Minecraft server just for children with autism and their families. Now, one year later, I can honestly say that I’ve changed a lot. I’ve changed because I’ve learned a lot. Some of it good, some of it not so much.

This is what I’ve learned in 1 year of running a Minecraft server for children with autism.

Bullying1. Bullying is far worse than anyone realizes

In one year, Autcraft‘s list of approved players (whitelist) is now over 4300. From a very humble Facebook post to a few hundred people, word spread like wildfire. This happened because parents had finally found a place for their children to play where they wouldn’t be bullied.

It’s not just the quantity but also the quality. Most kids are used to the hitting, kicking and teasing. On Minecraft servers, the bullying usually involves killing them, destroying their stuff and stealing everything they have to the point of making the game unplayable.

The worst though, is that these kids, some as young as 5 or 6, are told that they should be killed or never have been born because they are dragging down the human race. They’re told they’re less than worthless, they’re a burden on everyone, even their own parents. They’re told that, if they care about people, if they care about their parents, they should commit suicide.

Next time someone talks to you about having autism and being bullied, don’t respond with “well, everyone is bullied” because there is no comparison.

2. Being autistic makes you a target

Three weeks after opening our doors, Autcraft became the topic of several troll/hacker forums including the infamous 4chan website. A victim of our own success, these places heard of us quickly and immediately determined we’d be an “easy target” to “make a bunch of autistic kids cry.”

Since then, we receive applications from troll/hacker groups at least 2-3 times a month and our server is DDOS attacked at least once a week.

3. Autistic is to ‘retard’ as Autcraft is to…

People are using ‘autistic’ in the place of ‘retard’ in their lame attempts at insulting others but I didn’t realize just how much until I started finding Autcraft being used as the insult across the Minecraft community. For example, when two people are insulting each other, one would suggest that the other belongs on, or should go back to, Autcraft.

If we aren’t targeted for attack, we’re used as an attack on others.

calm down4. Autistic children are mastering a technique that most people lack

I have seen many autistic children on our server get so mad that others can’t help but change ‘rage’ from a noun to a verb. “He’s raging.” When a child with autism gets to that point, there is very little self control. The worst of the worst behavior that they are capable of can and often does present itself.

However, many of these children, most even, have this remarkable ability to stop, recognize this is happening and remove themself from the situation and return after calming down.

I can only assume that this is due to the very hard and diligent work of their parents and care givers (and even some handy apps) but this is something I am witness to very often and always amazed by. While most people don’t ‘rage’ quite as extremely as some of these autistic children do, they still prolong the issue and hold grudges for far longer than they probably should.

A secondary benefit to this is that they are able to recognize this in other autistic children as well and often come to quick resolutions after apologizing and forgiving each other upon the child’s return from calming down.

5. The kindest community in all of Minecraft

Ok, that’s a bit of a bold statement to make and I can’t really confirm it since I haven’t been on every server but I can tell you that every guest we’ve had from YouTube celebrities, Minecraft news sites, other server owners, teachers and more have all told me that they received the biggest and kindest welcome when they joined Autcraft and continued to experience the friendliest atmosphere they’ve ever had while child after child offers to give them tours, help them find a place to build, help them build, give them advice and even just offering to be their friends.

This is surprising to most people as they assume a community comprised of socially awkward or special needs children couldn’t possibly be that well natured… that friendly. But it is. It really is.

Equality vs Equity6. Equality vs fairness

One of the most famous quotes in the autism community is “If you’ve met one autistic, you’ve met one autistic” which is another way of saying, each autistic is different with different characteristics, symptoms of autism, personalities, strengths and weaknesses.

On other Minecraft servers, rules are set in stone and everyone that visits that server must abide them. With Autcraft, while we do have a set list of rules, each child is essentially treated quite differently.

While this sometimes leads to some being upset that “it’s not fair” that two children are not treated equal, I have found that for 2 very different children to learn a new task, complete a task and have an equal experience, it is imperative that those two children not be treated equally in the beginning.

You treat them fairly, based on their strengths and weaknesses such that both children have an equal opportunity and that’s when everyone does well.

Positive Reinforcement7. Encouragement vs Discouragement

When children do bad things on a Minecraft server, the instinct is to jail or ban them. When they say bad things, they are muted.

On Autcraft, these things happen very rarely despite the fact that many of the players are children that have more communication impairments, less emotional control and more learned negative behaviours than even their own parents may realize.

The reason these punishments happen so rarely is quite simple: we encourage them to do better.

We reward players that show great improvement from Sunday to Sunday with Player of the Week. We take the players that show respect, maturity and a need to be a helpful contributor to the community and reward them with the added responsibility of being a Helper.

We offer many great rewards for players who simply do their best or make improvements over how they were previously.

Children want your attention. You can either wait for them to do something wrong to get it or give them opportunities to make you proud.

Communication is key8. Communication is key

When a player does act out, rather than mute or jail them, we ask them if they’re OK.

Nine times out of ten, we’re told about something happening in their life that is troubling them. We talk about it and they either feel better or don’t but the ‘acting out’ stops.

Communication is not limited to talking. For some we contact the parents with something their child did or said, sometimes it’s with concerns about how they’re feeling and sometimes it’s to tell them about the really great thing their child did.

Sometimes we have children on that are very young or unable to read/write the chat, in which case we set up a system with the parent such that if we move their child to a special room, that’s their cue to get mom or dad so that we can relay information to them, they tell their child and then they continue on playing.

Open communication, in what ever form we can achieve it, at all times, makes the whole experience better for everyone.

Be Yourself9. Progress is made when you’re free to be yourself

We’ve received so many emails from parents saying that their children are making better progress now than with years of therapy. Others are making friends for the first time ever. Some are learning to read and write when it seemed nearly impossible before.

I believe that the reason for this is simple: the children are unafraid to just be themselves.

When you remove the fear of bullying, embarrassment and the shackles of self-doubt, these children open up and do the things they love. They do it in the open and for all to see and others rejoice in it and encourage that. That’s when real progress is made.

They’re no longer afraid to spell something wrong, they’re no longer afraid to admit they like something they feel like maybe someone else would think they shouldn’t, they’re no longer afraid to speak up and say what is on their mind.

This is when real education happens. This is where real power comes from.  This is how real progress is made.

respect10. Respect

Many of these children are fighting battles that most people can’t imagine. For some it’s constant bullying while others have unaccepting parents. For some it’s not having any friends or the struggles that come with being unable to communicate effectively or it’s the blinding rage that seems to bubble up all too often despite their best efforts or maybe it’s other things like also having ADHD, Tourettes, seizures or any other number of other disorders or problems.

When I talk to many of these children, they are going through more battles than most adults would be capable of handling. We often joke that life was so much easier as a child than as an adult but for many of these kids, that simply is not true.

Talk to them with respect, make your best efforts to listen and to understand and never dismiss their struggles.

They will respect you when you respect them and that’s when you’ll have an opportunity to truly help each other.

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Disability Savings Benefits For Low-Income Families With Special Needs

Canada Disability Savings Bonds

khunaspix

The Registered Disability Savings Plan (RDSP) is a wonderful savings vehicle for people with prolonged disability. It may attract two key benefits from the government. One is the Canada Disability Savings Grants, a very helpful matching grant to enhance the savings for the person with special needs. However, I’m often being asked the question: “If a low-income family could not afford to make any contribution now, how could they get benefited from having a RDSP account?” This is when the Canada Disability Savings Bonds (CDSB) comes into play.

 

The CDSB is designed to provide extra funding for low-income families with disability. Unlike the matching grants, the CDSB does not require the family with disability to make any contribution. The government will solely look at the net family income, and decide how much disability savings bond will be deposited into the disabled person’s RDSP account. The maximum lifetime CDSB one may receive from the government is $20,000.

According to the Canada Revenue Agency’s Website:

“The amount of the bond is based on the beneficiary’s family income. The beneficiary family income thresholds are indexed each year to inflation. The income thresholds for 2013 are as follows:

  • $25,356 or less (or if the holder is a public institution), the bond is $1,000;
  • between $25,356 and $43,561, part of the $1,000 is based on the formula in the Canada Disability Savings Act;
  • more than $43,561, no bond is paid.”

* Note that for minor beneficiary, the family net income is that of his or her parents, while beneficiary over the age of majority, the family net income is that of the beneficiary and his or her spouse, if applicable.

Another very appealing rule is that unclaimed CDSBs may be carried forwarded. One may claim back the amount up to 2008 or the year the beneficiary is eligible for the disability tax credit, whichever comes the later. The maximum carried forward period can last for 10 years.

 

Let me show you a real life example:

Awhile ago, I met a single mother where the child is diagnosed with autism. In our conservation, she revealed that she was unemployed for a long time, and did not have much savings to make any contribution into the RDSP account. Knowing that the child was already approved with the disability tax credit before 2008, I advised her to setup the RDSP account.

Given that her net family income has always been below the first threshold of $25,356, the child is entitled to $1000 of bonds since 2008. (Note that the income thresholds are indexed each year to inflation). After we setup the RDSP, the government has deposited $6000 into the account. (This is the 6 years of disability savings bonds from 2008 to 2013)

The $6000 is now growing within the investment portfolio that is suitable for this family. The best thing is this family did not even contribute a single dollar into the RDSP to make this happen.

 

Disclaimer:
This article is for general information only and is not intended to provide specific personalized advice including, without limitation, investment, financial, legal, accounting or tax advice. Please consult an appropriate professional regarding your particular circumstances. This article does not constitute an offer or solicitation in any jurisdiction in which such offer or solicitation is not authorized or to any person to whom it is unlawful to make such offer or solicitation. References in this article to third party goods or services should not be regarded as an endorsement of these goods or services. This article is intended for Ontario, Canadian residents only and the information contained herein is subject to change without notice. The owner of this article is not liable for any inaccuracies in the information provided. Image Courtesy khunaspix/ FreeDigitalPhotos.net

 

Have any questions about the Registered Disability Savings Plan? Feel free to connect with me!

 

Samuel Li
Investment Fund Advisor | Investia Financial Services Inc.
Sales Manager & Financial Consultant | Excel Insurance Agency Inc.
Mobile: 647-294-0702
Email: Samuel@SamuelConsultant.com
Website: http//SamuelConsultant.com
80 Acadia Ave., Suite 205, Markham, Ontario. L3R9V1

 

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Dear news media, this is how you fail the autism community so badly

The autism community’s biggest enemy, by far, is the news media. How so? Well, first of all they report the “terror” of autism, the “suffering” of autism. Secondly, they take any report that says “We put X and Y in a room together and found a Z% correlation” and create sensationally outrageous headlines such as “Z is caused by X!!!! Your children are doomed!!”

If you are not a part of the autism community, I can understand how this must appear to be an over exaggeration. If you are in the autism community, thank you for recognizing that it is, in fact, not an over exaggeration.

To give you two prime examples of how the news media agencies fail us, we only need look at what is happening this week.

“Significant” Link

Study: ‘Significant’ statistical link between mass murder and autism, brain injury” - http://www.washingtonpost.com/news/morning-mix/wp/2014/05/21/study-finds-significant-portion-of-mass-murderers-and-serial-killers-had-neurological-disorders-including-autism/

This article names all sorts of serial killers that you either hate or will hate after reading about them, names like Adam Lanza, Seung Hui Cho, Jared Loughner and Jeffrey Dahmer. Having just come off the headline of “significant statistical link between mass murder and autism”… can’t you just feel that emotion taking over? 

Oh wait, we skipped this one minor paragraph tucked away in the middle somewhere that has little importance… it’s this one:

The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder. “We’re not saying people with autism will be serial killers,” Allely said, adding “it’s way too early to make any statement like that.”

Hey wait, that does seem important, doesn’t it?

To me, a more appropriate headline would have been “Anecdotal and speculative information researched on autism and mass murder finds it’s way too early to say people with autism will be serial killers”.

Well, maybe not, it’s a little long and granted, it doesn’t pull in the readership that “significant link!!!” will.

Now, in my own research, I discovered that the number of homicides in the US between 2000 – 2010 was 165,068. 

This week, one person with autism plans a murder and suddenly we’re having studies about there being a potential link? Where are the studies that say “hey, 165,000 murders were by people that had no disorder. Could be a significant link!”?

Bullying Autistics Leads to Murder

This second bit of news also bothers me on another level.

Santa Barbara Shooting Suspect Calls Loneliness ‘Darkest Hell’” - http://abcnews.go.com/US/santa-barbara-shooting-suspect-calls-loneliness-darkest-hell/story?id=23855994

In this article, they write

“Schifman said Rodger was diagnosed as being a high-functioning patient with Asperger syndrome and had faced bullying through much of his life as he had trouble making friends.”

Now, I talk to autistic children every single day and at least 2-5 of them each week that feel like committing suicide due to the amount of bullying they are subjected to.

There are literally hundreds of autistic children dying each year due to bullying.

Why?!!? Why are there 100′s of children committing suicide due to bullying each year and no one cares?

But 1 child plans to commit murder due to bullying and suddenly this is national coverage? And autism is a big part of the story?

This is heartless and devastating to those of us with autism, those of us in the autism community and to your audience in general.

Stop Hurting Us

Stop Hurting Us

You Are Hurting Us

Listen, I understand that you need to get enough ratings, you need enough of an audience to “rate” against your competition. But please stop!!

I am begging you, I’m am pleading with you and I am insisting that you stop making autism out to the bad guy.

We are not mass murderers any more than non-autistics. We are not suffering any more than anyone else with depression or bullying. We are not this evil force that you paint us out to be.

We are children, adults, parents, friends, neighbors… we are your brothers and sisters.

You need to understand, you are hurting us. You are causing the suffering that you report about by reporting the way you do. You have become the bullies and you are bullying us.

Stop the sensationalist headlines. Stop burying important facts. Stop singling us out of a crowd of thousands and saying we all must be like that one in the crowd. Stop making us that thing to be feared.

Stop hurting us. Please just stop hurting us.

If you can’t find it in your hearts to start helping us, at least, please, stop hurting us.

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PETA STFU ASAP – signed, the autism community

PETA has unveiled a new ad campaign that aims to turn people to the vegan side. Now, there’s nothing wrong with deciding to become a vegan. But creating an ad campaign to scare people with the dreaded “autism disease” to do it?

That’s beyond disgusting.

Their article, along with a billboard image that they’ll be using, is shown below:

http://www.peta.org/features/got-autism-learn-link-dairy-products-disease/got-autism-billboard

 

 

 

 

 

Allow me to respond to various points in this “article”, point by point.

1. “Got Autism?”

Really?!?!? I mean, sure, it’s clever… “Got Milk?” turned to “Got Autism?” as if one leads to the other. But it’s not clever. It’s rude, dehumanizing, insulting and just plain evil of you. Clearly you’ve never met an autistic. Plus there’s also that minor detail about it being wrong, or very likely wrong, as we’ll cover again in a moment.

2. disease???

Have you ever even heard of autism before writing this? Did you do any research at all before writing this or are you just spouting points you found on the internet somewhere? Are you aware there even is a difference between a disorder and a disease?

3. “More research is needed”

Well hell, start stringing up your “Got Autism?” billboards before that happens!!! Spend money before someone proves you wrong!

4. “The reason why dairy foods may worsen or even cause autism is being debated.”

So write about your stance on it immediately!! Don’t waste time on who’s right and who’s wrong when there’s vegans to be had.

5. “The Internet contains numerous heart-wrenching stories”

Well, I’ll give you this one. It’s true, anecdotes are proof enough for most people. Just ask Jenny McCarthy’s anti-vaccine fans.

6. “Anyone who wants to alleviate or avoid the devastating effects of autism should give cow’s milk the boot and switch to healthy vegan alternatives instead.”

Oh thank you!! Let me get my check book! Thank you so much for solving all of the world’s problems!!

 

Go home PETA, you’re drunk.

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