Tag Archives | sharing

Find your own voice

By on June 19, 2013 in Autism

Your voice mattersOn a blog dealing with autism, the title may put some on edge. Not all autistics can speak verbally and even many that can or find another way are often not heard or even ignored.

But that’s that not really what I’m trying to address right now. Instead, I’m talking to you… the one that comments or shares what I write and says “he says what we all think” or “this is so much like how it is for me”. Don’t get me wrong, I appreciate that, but still, I encourage you to find your own voice. Don’t just share what I write and say “ditto”, but to create your own or to still share mine but to add in yours on top.

This is also to those that say “that’s not how it really is because my child is different” or “you give people a false impression with your feel good BS”. To you I say, go find your own voice. Leave mine alone.

Here’s the thing, we have all heard the one classic autism quote, the one that defines everyone by defining no one: “If you meet one person with autism, you’ve met one person with autism.” And we all know it to be true. And yet we still strive for commonality and relatability and we still hate those that state something to be true when it’s so obviously not for us. Well, ok, maybe only a small few hate. But they’re loud.

We have parents that resent everyone comparing their child to Grandin, Fleischmann or *shudder* Rainman, we have parents hating other parents because they’re not positive or negative enough, we have autistics hating parents because they speak from a parents perspective and don’t consider the child’s and then they hate parents for speaking of the child’s perspective when they can’t possibly know what their child is thinking. We even have parents hating autistics because autistics are representing autism differently than those parents wish they would and we even have autistics hating other autistics for making people think that all autistics are like them.

There’s more but I think that is a good enough list to suffice. I would hope that you can see where I’m going with this.

Ultimately, this all comes down to a form of silencing. People that see autism as being a negative thing will want me to stop speaking about it in a positive way. People that see autism as a positive thing will want me to stop speaking out about the negatives.

This is so very wrong. Very very wrong. I mean, I get it. I understand that it’s not how it is for you. But that’s YOUR story to tell. I’m telling mine. You tell yours.

The fact is, we’re equals in this world. Which means, that if I have to stop being so positive, then you have to stop being so negative and thus, no one learns anything. Where as, if I continue being positive and you continue being negative, people will learn everything. The same thing happens with parents writing from a parent’s perspective and autistics writing from an autistic’s perspective. Or care givers and teachers writing from their own perspectives.

See how that works?

Now, to those of you that actually like what I have to say and feel it’s what you would say anyway, I am trying to be fair. If those that disagree should tell their own story, then so should those that do agree.

The reason? We’re all different. Our children are all different. Our stories are all different.

I’m not saying that you have to start a blog if you don’t already have one but rather, just tell people. Face to face, in social media. What ever. Even if it is by sharing what someone else writes, include your own story along with it. Explain how your story differs, not just how it’s the same.

Only by hearing every story can people understand just how incredibly true and important the grand scale of “If you meet one person with autism, you’ve met one person with autism” really is.

I don’t want to be your voice whether you like what I have to say or not. I want you to share your own story. With me and with everyone. Whether I agree with it or not. Whether anyone else agrees with it or not.

Stand up and shout it out! Type it, write it, sign it, morse code it… in what ever way you can express anything to anyone, I encourage you to do it as best you can and as often as you can.

I won’t be silenced and I won’t silence you.

This is my story. I’m eager to hear yours.

Comments { 3 }

Autism awareness? I live it every day

By on April 14, 2011 in Autism, Autism Awareness

Not a lot makes me cringe more than seeing/hearing/reading a parent of a child with Autism say that they don’t bother with Autism Awareness Day/Month because they don’t feel they should tell others about Autism since it doesn’t affect them.

autism awarenessI’ve read more tweets and posts this month than I’d like to from parents giving a multitude of excuses why they haven’t gotten around to it, or haven’t bothered or feel that they simply shouldn’t attempt to raise awareness of Autism… and that’s kind of sad.

How can a person recognize the signs in their own child unless aware?

There’s a lot of debate within the Autism industry as to whether or not numbers have risen (at least in part) due to the fact that people are simply more aware of what to look for, recognize it earlier and thus, are more likely to get an official diagnosis.

There’s good reason for that debate.. it’s because it’s true that greater awareness is what leads to people being able to understand why their child won’t look them in the eye, doesn’t respond to their name, doesn’t talk yet, separates their blocks by colour and lines up their toys in a perfectly straight line across the living room.

Finding the support and information they need

After a diagnosis, most parents feel extremely lost as they’re put on waiting list after waiting list and worse than finding no answers, they find a lot of contradicting answers.

If you and I didn’t speak out, and speak loudly, they’d never find us. And if they never found us…. well then, they truly would be alone.

Waiting lists don’t explain to parents the benefits of weighted blankets, the gf/cf diet, the necessity for strict routines, how to handle IEP meetings and so on and so on.

Will your child forever be a freak or will people understand him/her better one day?

How can we expect parents to stop judging us and our children during those grocery store meltdowns if they never learn about Autism? How can we expect our childrens teachers to have more patience or even recognize the signs themselves? How can we expect more random people to step up and offer gymnastics, swimming, skating and other community type programs just for our children with Autism… simply because they want to help?

People won’t just look at your children differently… they’ll look at them as weird, freakish or even worse because if they’re not aware, what else are they supposed to think?

Conclusion

No, maybe the meltdown happening in your living room isn’t anyone’s business but that of your own family but that shouldn’t mean not raising awareness at all.

By not doing your part, you may be leaving one troubled child undiagnosed… you may be leaving one parent lost with no one to turn to… you may be letting some innocently ignorant person incorrectly judge another person, making them feel like a terrible parent.

Worse than all of that, you are indirectly affecting your own child’s future because one day your child will have to face those people you didn’t bother to share your burden with and those people won’t understand him/her. Those people will judge your child and judge them harshly.

They say that if one person recycles everything, little change is made in the world but if everyone recycles just one thing, a very significant change is made in the world.

Same goes for Autism Awareness. You don’t have to get on national television or scream from the rooftops… it’s not about invading people’s lives. It’s about sharing so that those that want to listen, those that want to hear it, those that seek it out… can find it.

You may live it every day and those you’re attempting to educate don’t… but maybe they will one day. And maybe, just maybe, your voice will be the voice that makes a positive impact on their lives that lasts a life time.

Comments { 6 }

Autism Advocacy – making sure we don’t lose ourselves along the way

By on March 7, 2011 in Autism

advocacy – active support of an idea or cause etc.; especially the act of pleading or arguing for something

I think it’s safe to say that most of us fit into this definition, whether we have children with Autism, having Autism ourselves or just know someone with Autism. We hit Twitter and Facebook in an effort to find out more, share stories, advice and general chit chat… and we give a voice to the disorder that is Autism.

Somewhere in our efforts, we begin to focus on the numbers and start to get off track a little. It’s not something we all do but it is something that’s easy to do and I see it often.

Counting your Friends and Followers

It’s very easy to succumb to the allure of the high follower count or Facebook fan count on their fan pages. It becomes an addiction for some people where they just need that number to get higher and higher, as if it adds to their credibility or just makes them feel more important.

I’ve said it before and I’ll say it again… I’d gladly put up 1000 of my followers against many other people’s 10,000 followers any day because the people that follow me do so because they have an interest in what I’m advocating.

I don’t employ any “team follow” strategies or employ any schemes from “get more fans” pages… I simply be myself, share my story and post an interesting link that I find here or there.

Getting thousands of followers or fans is great because it means greater advocating power but not if those people really have no interest in you or what you’re saying. Don’t go for the fast numbers.

It’s not about you

It saddens me when I see people begin to think of themselves as the victim, or even worse, egotistical when really they’re simply another advocate like the rest of us.

Granted, some are extremely wise, some are very knowledgeable and certainly some very much deserve extra attention but there’s a very good chance that those people are simply doing what the rest of us do… advocating.

No one person is above the cause for which they advocate and no one person should advocate for the purpose of praise, pity or pride. Do it because it’s your passion. Do it because it’s for the good of all people.

Advocating is not war

If advocating meant going to war for something, they would just call it going to war instead of giving it a nice term like advocating. As the definition says however, arguing is fine. It’s almost a foreign concept with the anonymity of the internet but arguing and healthy debate can be very informative and even therapeutic.

But some people take it way to far. Random attacks on people that aren’t even involved in the subject for which you’re advocating is not ok. Attacking other advocates because their specific opinions do not match your own is not ok. Declaring war on the uninformed, the naive or those that are not like minded is simply not ok.

Inform these people, debate with these people… they make take extra work on your part but making enemies is really not a good way to get a message across, especially if those people are advocating for the same thing as you.

Talk to a person, not the world

I think, and this is just me personally, that if you talk to one person and inspire them, move them, touch them or just otherwise get their attention, you’ve done your job as an advocate. If you can speak to one person as an advocate and feel that what you’re doing has real purpose… then all those numbers, all that pride and praise.. all of it will come on it’s own.

You can’t hope to speak to the world if you can’t speak to a person any more than you can hope to run before you learn to walk.

Advocacy is a very personal experience as well as a passionate one and if your goal is to share that with the world, then you had better focus on the person. Focusing on the world will dilute your attention, it will dilute your message and it will take away so much from the value of what you share.

The real beauty and value in what Ghandi, The Dalai Lama and others like them have to say is that it touches us as individuals, as though they are speaking directly to us. They’re not messages to the world for the world to do something. It’s a message to you and I on how we are or who we should strive to be.

Focus on the person. If your message is the right message, the world will hear it.

 

Comments { 6 }