Tag Archives | advocacy

Adults are bullied too. Don’t let it happen to you.

By on February 11, 2014 in General

Every day I see people, grown up people, being bullied online. Only they don’t know that they’re being bullied.

What’s worse is, I see people, grown up people, being bullies online.  Only, they don’t know that they’re being bullies.

Chances are, if you’re in the autism community, you’ve been bullied. Yes, people get bullied online every day no matter what community they’re in. But when it’s parenting, especially special needs parenting, either you’re very new to the experience or you’ve experienced bullying.

Parents, instead of receiving suggestions, advice, education… they’re demonized, accused of being potential murderers, abusive, future stealing wrong doers. Every decision, choice and even every little word they say is put under a microscope and ripped apart. A parent receives an autism diagnosis for their child, visits an autism Facebook fan page and asks a simple question. The next thing they know they are in tears, hating themselves and feeling worthless. Sounds extreme? I’ve seen it happen. And it is not ok.

Autistics, instead of being heard are told that their opinion doesn’t matter because they’re “not high functioning” or “not low functioning” enough. They’re told that they need to be cured or worse, that they never should have been born at all. When the media rolls out in search of someone to talk to about autism each Autism Awareness Day, who is it that they search for? Parents. And if they do look for autistics, they seek out the children that are behaving the worst… the ones that will make headlines and drum up sympathy.

It is even worse if you’re an autistic parent. Believe me, it makes absolutely no sense because to me, it seems to me that the smart thing would be to get the perspective of someone that has been an autistic child, is now an autistic adult and also the parent of an autistic child. Who could have more insight into all angles than that? But sadly, no. Instead of seeking autistic adults out for guidance, they are bullied by all comers. Other self advocates, other parents, the media… all of your choices are wrong, all of your opinions are invalid.

Now, don’t get me wrong. Not everyone in the world is a bully. Not every experience is going to go that way. However, as I said, unless you’re very new to the community, you’ve experienced it in some form or another.

What I’m saying is, you need to not be the victim. You need to not let yourself be bullied. You need to stand up. Whether it’s to stand up and not take it, to stand up and walk away or stand up and just declare that you won’t take it anymore, you need to stand up against bullies. Prove to your children, all children, your fellow adults and everyone that bullying doesn’t belong in the autism community or even on the internet anymore than it does in our children’s schools.

In many ways, this is worse than what children get in school. I’d rather take a punch in the face than a bunch of other parents or self advocates telling me that I’m a terrible parent.

But just like the punch in the face from my school days, I don’t have to take it. Neither do you.

Acceptance can not be achieved by bullying others. Lack of acceptance does not bring about more acceptance. Anyone that professes to want acceptance for all but bullies you into it is lying, or strongly misguided. Not one single person on this entire planet that truly wants to be accepted or for others to be accepted would ever, in a million years, attempt to make you feel like you’re worthless. They would never ever want you to feel like they feel… bullied.

Why do some people hate me? Why do some people attempt to bully me? It’s because I refuse to believe that their brand of bullying is acceptable and furthermore, I refuse to join in. I will not be a part of it. Even if I do not agree with someone else’s opinions, methods or decisions… I will not bully them for it.

Don’t ever let yourself be bullied but more so, please, please please… do not ever find yourself being the bully either.

We are in this together. The bullying stops now.

It’s my hope that you share this with everyone, far and wide… if not this blog post then certainly the message; do not let yourself be bullied. You do not have to feel that way.

Please watch and consider this:

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Autism advocacy of the future – our children

By on April 6, 2013 in Autism

megaphone-300pxAutism has been around a very long time. It’s definition? Not so much. But even in the last 60 years or so, awareness has and even the definition of autism itself has changed quite dramatically over time.

It started with one doctor, then a couple of doctors and eventually a medical community that would dare to write about it and so on until today, we have parents and even autistics themselves emerging as, not really the dominant voice but certainly a loud and powerful one. At least, it’s getting there anyway.

It’s encouraging but I know that there is still a long road ahead. With constant battles between whether or not the “low functioning” or “high functioning” groups should get the more prominent voices, whether those that want a cure or those who want acceptance should be heard the loudest or most often… progress will surely still be made but there is no solution to the fights or even societal acceptance/understanding any time soon. There is obviously still a lot of work to do.

I have two children. One with autism and one without. I do not know if they’ll continue to advocate for autism in the future but if they do, I’d like to think that no matter which approach they take, that they’d be listened to.

One as a self advocate, one as a sibling, one as an autistic parent maybe and one, possibly as an autism parent. It’s in their genes, this I know. So the future is ripe with possibilities of any scenario.

I’d like to think that, if my advocacy has meant anything at all today, that one day in the future, no matter what their role, no matter which end of the spectrum or what their goals may be, that no one ever try to silence them.

If they’ve learned anything from me at all, then they will know that their own hard work, their own message, their own passion… that is what will drive them in the future. That is what will make them heard. That is what will move people to listen.

And most of all, no matter what, no matter who and no matter how much they try… never ever, not ever, let anyone tell you stop.

Both of my boys have a lot to offer and they still have a lot of growing to do. Should they decide to, should I do my job effectively, I can only hope that they would advocate together, as a team… an unstoppable force, instead of against each other.

Because that’s the kind of advocacy I want for my children, for all of our children and for the future.

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The kind of self advocate that I want my child to become

By on February 11, 2013 in Autism
Tyler and Cameron - Brothers

Tyler and Cameron – Brothers

I am writing this because I’ve had quite a few people ask me if I want my son to be an advocate like me or what I would hope he’d say. I thought this would be a good time to address those questions.

If you’ve read anything from me in the past, you likely expect the answer from me to be something along the lines of “a positive role model that is respectful and understanding of everyone.”

And yes, should he truly wish to speak up and raise awareness, understanding and acceptance of autism, that is pretty much the exact type of advocacy that I would love to see from him.

I understand that some advocates take the “fight for our rights” approach and that is very much needed as well. I won’t lie. Yes, some get caught up in the battle and it becomes hateful and negative… but this isn’t about that right now.

There’s more kinds of advocacy too. As much as some might disagree, those that fight for health care changes, particularly those surrounding vaccines, are advocates as well. Those that fight to cure their now adult sons and daughters that are still living at home or in a home, they are advocates.

There are even some self advocates that wish to be cured of their own autism. They are self advocates all the same. Even if they might not be sharing the sentiment of the “majority.”

I’ll love and respect my son and be very proud of his efforts no matter which approach he takes.

However, the honest truth is… and it’s kind of hard for me to admit is… I sort of hope that he doesn’t get into the whole thing at all.

That’s not to say that I’ll be disappointed if he does. It would be pretty awesome if he does because I think he can do a lot to improve things.

But I kind of look at it like how we shelter our kids from the 6 o’clock news. Because they don’t need to know about the wars, the murders and the state of our economy. They are happy. Carefree. The world reaches as far as their furthest friend’s house down the street and the worst thing that could happen is that they drop their ice cream cone in the middle of summer.

A self advocate (or even a parent of a child with special needs for that matter) that lives their own struggles, battles and daily disappointments and achievements will have enough in their lives to keep them both busy and content too, depending on how that day goes. For most people, that’s more than enough.

The advocacy world seems pretty great at first, getting positive feedback and support and reaching more and more people with each day’s effort you put forth. But at some point, it changes. You start reaching haters, who “come after you” where ever you may be sharing your thoughts. You get people who don’t just disagree but disagree via attacks and threats. You get people who expect more from you whether it be more effort or more time.

The best advocates are the ones that can deal with these things either by tackling them head on, rising above them or by simply paying no attention and doing what they do regardless.

But it’s taxing. It can wear you down and make you tired.

And at some point, invariably, you start to wonder…. what’s the point?

Do I hope that, should he become a self advocate, that he’ll have the strength and wisdom to over come these hurdles? Of course! I hope I can be strong enough to help him be ready should that time come or to be there for him at that time. I hope even more that he can be a self advocate and not need to experience those hurdles at all.

But the honest to goodness truth is, I would kind of rather him just not need to get to that point.

I’m one of those parents who, probably blindly and even wrongly, wants to shelter his kids from the evils of the world. To not ever have to hurt. To never know what terrible stuff is really happening out there.

But they will. One day, many days… they’ll be made all too painfully aware.

And avoiding the advocacy world won’t stop that. But it will help him to avoid extra hardships. Some extra hurdles that he need not worry about.

Not much would make me more proud than seeing him pick up a metaphorical sign (or a real one for that matter) and fight for himself and others like him, for what ever reasons and in what ever manner he chooses. I believe that he would inspire many and do great things.

But I’d also be quite happy and every bit still just as proud to see him go about his life, focused on what matters most to him, what ever that may be.

Because in the end, that’s what this is all about. Being accepting of what others do, even if it’s not what we did, or what we want them to do. To let them be their own person, whether it’s some other advocate or someone that refuses to be an advocate.

Because if my own advocacy is to mean anything, if it’s to have any value at all, than it has to start with me.

That means having my own hopes and dreams, even hopes and dreams for those that I love, and having the understanding and respect to accept that not only do they not have to fulfill those hopes and dreams of mine but that I will be every bit as happy and proud of of them for having their own hopes and dreams.

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What is Autism Advocacy to you?

By on August 31, 2011 in Autism

You would think that a question, such as “what is autism advocacy to you?”, would be pretty straight forward. However, if you ask a few thousand people that question, you’ll very quickly realize that it’s most definitely not straight forward.

Advocate

verb
1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

noun
2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.
3. a person who pleads for or in behalf of another; intercessor.
4. a person who pleads the cause of another in a court of law.

I think everyone can agree that, even though there is an official definition, there is no one way to be an advocate.

Autism Advocacy

So I asked what Autism Advocacy is to people on various social networks and thought I’d share some of the responses with you:

#empowerment #support to let families affected by #Autism , #ASD , & #FragileX know ‘they are not alone’

Active support that raises awareness, results in change & aid 2 individuals & families.

For me it means donating money to autism research, doing walks for autism, striking up a conversation about it with strangers in the checkout line, at the park or wherever. Online, it means posting articles, videos, blogs etc talking about different aspects of the disorder. I think it is a combination of these things, as well as being a “voice” for those people affected by it.

Raising awareness of the breadth and scale of autism and reminding people it is a life long condition. I certainly have got into the habit of posting articles / starting conversations about issues on autism.

Autism Advocacy on a parental level is educating the awareness of the challenges you face everyday with your child who is diagnosed. Especially with your community leaders, your local government, and advocating for change to enhance and strengthen the bonds of Autism Families. Most families are not able to financially support the intervention that is provided through health insurance, Fundraising is important aspect of providing those needs to your family. Structure is vital for children with Autism.

I even got some responses such as this one:

Unfortunately, mostly very loud parents.

Which may bring you to feel upset at first but I think when you really think about it and think back to some of the other parents you may have come across in your life, this actually may be true… maybe not “mostly” but certainly some do qualify.

You can quickly see just how varied the answers are. They’re all advocates but they look at the tasks, the targets and those they’re advocating for quite differently.

Who are some good Autism Advocates?

I also asked who people felt are good autism advocates. Many people named Temple Grandin, some people mentioned people on Twitter, such as @Diaryofamom, @shannonrosa, @CorinaBecker, @AutismWomen and @LauraBShumaker.

The response from some parents where that they, themselves, were the best Autism Advocates. Why?

Well, as the parent of a child with Autism, no one could advocate for their child better than they could.

But this brings us back to the first question, what is Autism Advocacy?

In a rather amazing bit of good timing, Jim (@GingerHeadDad) wrote this just yesterday: http://gingerheaddad.wordpress.com/2011/08/30/what-is-wrong-with-just-being-a-parent/

I had written several replies in his comments but never hit submit on any of them. I felt I wasn’t expressing myself clearly, I felt I wasn’t doing his post justice. I felt… I felt that the questions that I had been asking essentially are the response to his post that I am looking for. So I decided to write up a blog post of my own in response and share that in his comments….  which brings me to this:

Autism Advocacy – As Defined By Stuart Duncan

Autism Advocacy is the speaking up about, speaking on behalf of, speaking in support of, speaking in defiance of and speaking in defense of yourself, a loved one, all people with Autism or for Autism in general whether you are speaking to yourself, one other individual, a group of individuals or the entire world.

What does that mean?

It means that it doesn’t matter how much money you’ve donated, if you’ve created laws, written books, built buildings or if you’ve informed a family member, had a teacher recognize a special situation involving your child, had an impromptu discussion with a stranger or even if you’ve simply come to self realizations all on your own…. you are an Autism Advocate.

Never feel like you aren’t doing enough simply because your advocacy efforts are focused on those you love.

That change you made in a teacher, that stranger you talked to, that family member that has a better understanding… they’ll carry that forward to the next time they encounter someone with Autism and it will affect them. You will have made a difference.

Always accept that you feel you could do more but never let yourself feel like you haven’t done enough.

We all see advocacy differently. We all see Autism differently. We all have a different view that leads us to different goals.

It’s not about the number of people that hear you. It’s not about the size of the changes you can inspire in the world.

Big or small, loud or quiet, we are all advocates.

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To the world you may be just one person, but to one person you may be the world. ~ Brandi Snyder

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The life of an autism parent advocate

By on August 21, 2011 in Autism

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

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