Tag Archives | understanding

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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Why I write about autism

By on September 19, 2012 in Autism

If you read my blog already, you may have noticed that I haven’t posted in a little while now. The blog is 2.5 years old now and I think I’ve hit a stage in this blog’s life where I start to question what it is that I’m doing with it, where I want it to go and most importantly, what exactly it is that I’m trying to say with it.

It’s caused me to ask myself one simple question: why do I write about autism?

In the beginning

When I started my blog, it was mostly just to write about my son and the experiences we had together. I made observations about certain things he’d do and I’d give examples of how my wife and I became aware that he had autism.

I didn’t write to make a statement or to impact other’s decisions or opinions. I didn’t write to inform anyone of anything either. I didn’t write because I felt I had to or because I felt anyone wanted me to.

It was a quiet but very satisfying time for my blog where I felt good about what I was doing. I still do, of course. But it was a different kind of good feeling. It was peaceful and gratifying.

As my blog grew, that all changed.

Over time

As the blog grew, like most bloggers, I found myself weighing in on community topics, giving my opinion on researchers that seem to only be trying to blame mothers for their child’s autism, on the crazy things that Jenny McCarthy was up to, the vaccine debate and so on.

I tried to balance a lot of that with emotional posts, praising people for being people. Whether they’re parents doing their best or autistics for doing their best, I tried my best to keep myself and my readers looking towards the positives.

But somewhere along the way, again, like most bloggers, I found myself being yelled at or dragged down by bickering and arguing, general negativity or any number of other methods.

Some people feel they’re forever the victim and no matter what I say to them, it’s an attempt at hurting them more. Some people feel that the universe is a very dark place and that I offend them by simply having a smile. Some people feel that their experiences outweigh my experiences and thus, I should not have my experiences at all.

These things sound absurd, but they really happen.

The law of averages says that, in the case of blogging, no matter how much you try to avoid negativity, the more readers you reach, the more likely you are to encounter it.

Eventually it becomes inevitable and should you be able to cope and continue to grow, you’ll encounter that negativity more and more, over and over. Should you reach a sizable enough audience, it becomes a daily occurrence.

And that can weigh heavily on your shoulders. No matter how strong you were in the beginning, it gets hard.

why write about autismWhy carry on?

So the question becomes, if you’ve gotten yourself to the point of the daily negativity, why carry on? Well, the law of averages may state that you’re going to be stuck with it but it also says that you’ll have thousands of positives for every negative. And having thousands of positives daily really is worth one negative, right?

For example, I often hear from people how my posts have helped them when they needed it most, or that my posts are what they look forward to reading every day, or that appreciate the time and energy I put into doing what they wish they could do themselves… I love to hear from people who say these things, not because they praise me, but because it means that I am making a difference. I am outweighing the negative with the positive. What I write matters.

Still though, why? Why do I write? It’s not for the praise. It’s not to know that what I say matters. It’s not really even to make a difference. It is nice to hear these things. And believe me when I say that I honestly and completely appreciate every single one of my readers. I always make every effort to reply to every email and tweet and message.

But I’ve come to realize that I don’t write for my readers. I don’t write for the media. I don’t write for the masses. I don’t even write for my son.

I write for me.

That sounds self centered. I realize that. But it’s true.

Well no. It used to be true.

And that’s the problem.

Figuring it out

I’ve been frustrated for quite some time but only in the last month or so have I really just put the whole thing on hold and really given it serious thought.

Had I run out of things to say? Was I no longer able to cope with the negativity?

In my frustration, others reached out to me and told me to write for the good of all autistics. Others told me to write for my son and even more so, for his future. Others told me that, again, my writings helped them and that it helps others and thus, I should continue doing so.

These are all beautiful reasons to get back to my keyboard and push forward, but I didn’t. These reasons should have been good enough. They should have been all the motivation I needed. But they weren’t.

So I went back to page 1 and started reading. And it occured to me that all those reasons, while great reasons, were not the reason.

I needed to know why the frustration started. I needed to know where I went off course. I needed to know what it was that I was missing.

And I found it, back in my old blog entries.

I need to write for me.

No one else.

Going forward

I can’t say it enough, that I value and appreciate my readers and hope I never stop hearing the positives. I could do with less negatives but that’s another story.

But as much as I love every single reader I have, I have to admit to myself and acknowledge to you right now that I didn’t write for my readers in the beginning and I won’t do it anymore.

Somewhere along the way I did though. As responses came in and I started hearing from my readers, my reasons for writing slowly changed and I didn’t even realize it.  I started writing just to help people, to get more of those responses and to make a bigger difference.

I don’t know why or how, but I believe, that’s when I lost my spark.

That’s when I started to get frustrated.

I hadn’t run out of things to say and it wasn’t that the negativity became too much for me… it just didn’t feel right anymore.

And that is what’s most important, I think.

You can write for your autistic child or to help others dealing with autism or to educate others about autism or to make a statement about autism or to make a change in the world for autism; these are great reasons to write. And if these are your reasons for writing, that’s wonderful. But it’s not my reason.

I’ve realized that those are things that I hope my writings will do. But it’s not why I write.

If I write for me, as me, and stay true to me, those things will happen on their own. At least, I hope they will. They did before.

To stay true and honest, I need to write because I want to write. Writing for any other reason compromises that.

I hope you understand. Thank you for reading.

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Autism is

By on August 8, 2012 in Autism

I would like to talk to you about autism. I know, we talk about autism a lot, you and I. But somehow things have gotten off track and I really think that I need to make something very clear. Not for for you or my neighbor or for other people but for me, right here, right now.

I have been living with autism my entire life and didn’t even know it. It wasn’t until I discovered that my son has autism that I truly came to grips with what it really is. And I’m not talking about what I’ve read in medical research studies or transcripts or expert opinions or even public opinions. What I mean is, I know what autism is, to me.

autism isThis may sound a little strange but in a very general sense, autism is everything and it is nothing too.

Autism is the way a person perceives the world around them. It is the way they take it in, interact with it, experience it, process it and live with it. It’s the filter with which all reality flows through before becoming our own reality. It shapes a person’s past as well as their future. With each step forward, all that is involved in that step flows through a vail of autism which invariably alters the course they take towards their next step. Each step being a direct result of the step before it, exponentially affecting further steps ahead. We become a product of our combined experiences, each of which, affected and altered, whether for better or worse, as an effect of autism.

At the same time, autism is nothing, neither tangible or quantitative in it’s existence any more than any other thought, memory, expression, synaptic response or neurological interpretation to stimuli that every living thing is privileged with in it’s existence. It’s a unique perception unlike any other making it exactly the same as any other. It’s a tasteless, touchless, odorless, inaudible and invisible anomaly that isn’t really there.

There’s more, and this is important. So hear me out.

Autism is not a fight between parents. Autism is not a battle with the school board. It’s not about who is functioning higher or lower than someone else or even about what “functioning” even means nor is it about who should and shouldn’t be cured.

Autism is not about what a person looks like and it’s most certainly not about tendencies that a person might have, homicidal or otherwise. It’s not about taxing the system or making life hard on a parent and it’s definitely not about organ transplant bureaucracy.

Autism is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me.

I am tired. I’m tired of all of this.

I’m tired of reading stories in the news about mothers killing their autistic children. I’m tired of people making horrendous and false claims in the name of autism. I’m tired of the fighting, I’m tired of the name calling and I’m tired of the people who can’t admit when they’re wrong. I’m tired of people that are judgmental and I’m tired of the people who think it’s funny. I’m tired of people telling me what I should and shouldn’t believe, what I should and shouldn’t say and what I should and shouldn’t think.

I’m really, just tired. Very tired.

So here it is, as simple as can be.

Autism is me. It’s my son. It’s the little girl who can’t speak but screams with every breath she takes. It’s the little boy that completely loses control one moment but creates his own computer operating system the next.

Autism is the man that needs a heart transplant to live. Autism is the young woman that goes to Washington to fight for people she doesn’t even know but loves.

Autism is the life taken far too early by the parent that didn’t know what else to do. Autism is the life that wandered away from safety, scared and unknowing of the dangers around them.

Autism is not a disease. Autism is not a battlefield. Autism is not an opinion.

Figure it out. Work it out.

Because autism is a lot of people.

Autism is the perception, the experiences and the reality that effects and shapes what is to become a person’s life and yet, it’s nothing too, for all the same reasons.

It’s people.

It’s lives.

Autism is.

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Autism and empathy – Here’s another way to look at it

By on July 20, 2012 in Autism, General

EmpathyEmpathy:
The ability to understand and share the feelings of another.

There really is a severe lack of empathy where autism is concerned. Allow me to demonstrate.

  • You’re at a grocery store and your child has a complete meltdown and someone says “Can’t you control your child?”
  • You go to a restaurant and your child has trouble sitting still and someone says “Those people really need to discipline their child.”
  • You look really tired and worn out and someone says “Parenting can be tiring. You’ll get it eventually.”
  • You’re explaining the struggles that having an autistic child can bring and someone says “Oh please. All kids do that!”

Do I need to go on? Are you starting to see where the lack of empathy comes into play?

And this is just for the parents. Here’s a new list, from the autistic’s point of view:

  • Just go and play with the other kids. You’ll have fun if you just make yourself do it.
  • It’s not that loud. Just deal with it.
  • You’re doing it my way whether you like it or not.
  • Look me in the eyes when I’m talking to you. Stop being so rude.
  • You have to give me a hug or you don’t get what the others got.

Again, the list could go on and on. But I think you’re starting to get the picture.

I won’t even go into the whole bullying thing. I think it’s safe to say we can all figure out where the lack of empathy comes in when someone is bullied, autistic or not.

Yes, there’s a very distinct lack of empathy but it’s not necessarily coming from the autistics themselves.

Sure, some autistics might not understand the thoughts or feelings of others. But then again, some autistics might just not care. Maybe it’s because they don’t understand but maybe it’s because it just doesn’t matter all that much to what they’re doing at the time. Then again, maybe some autistics care very deeply and are just unable or incapable of expressing it.

That’s a very basic and rudimentary way to look at it. For more details and examples, check out Autism and Empathy.

The bigger problem, as I see it, is the lack of empathy towards autistics, not from autistics.

Instead of wondering if someone is caring about you or your feelings, consider how you can care for theirs.

That’s the great thing about feelings. You don’t need to get them to give them.

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Labels – Try as we might, we can’t avoid them

By on May 14, 2012 in Autism

I know some people that purposely don’t seek out an autism diagnosis (or any medical diagnosis) for fear of the label that it will attach to themself or their child… a label that they will have to carry for life.

While I could go into quite the long winded argument about all of the ways that a diagnosis would help far more than it could ever hinder… instead, I’d like to focus on the label itself.

The Unavoidable

Anyone that has ever attended high school knows that you simply can not avoid getting some type of label in life. It doesn’t matter who you are or what you do. Even the popular jocks get labels. See? They’re jocks!

They say that if you’re bisexual, you’re confused. If you’re gay, it’s a sin. If you’re fat, you look disgusting. If you’re dressed up, you’re conceited. If you dress for comfort, you’re a slob. If you speak you’re mind, you’re egotistical. If you don’t say anything, you’re rude. If you are nice to strangers, then you’re fake. If you cry, you’re a drama queen. If a female has male friends, she’s a whore. If a male has female friends, he’s a player. If you’re smart, you’re a nerd.

I could go on and on but essentially, the idea is, it doesn’t matter how big, small, tall, short, popular, unpopular, loud, quiet or anything else that you could possibly be… you’re going to get labelled.

It’s just how it goes.

label jars not peopleJudging a package by it’s label

The problem, I think, isn’t so much the label that we are given so much as the assumptions that are made based on that label.

For example.. if you see a woman with a lot of make up, physically fit, very tight and revealing clothing… many people would say “she’s a slut” and with one little word/thought, they assume they know her entire life story.

It becomes an even bigger problem when the label precedes you.  For example, going back to the high school reference, word travels fast so if you are really smart… people may start calling you a nerd, geek, poindexter… what ever they think will hurt most.. before they’ve even met you.

They can’t possibly know if you’re smart just by seeing you enter a room or walk down the hall but because friends talk to friends… people have already placed a label on you and prepared an entire method of dealing with you before having actually seen you.

This is a very shallow way of living, it’s not fair and it’s very close minded… but we all do it. At least to some extent. When we hear about another parent who behaves one way or another, talks a certain way, believes a certain thing… we’ve already made assumptions and possibly even decided if we’ll like them or not before we ever say hello.

Nicknames are just labels that we approve of

Sometimes, when we get a label based on the way we actually are… as given to us by friends… we don’t mind them. Sometimes they even evolve into nicknames that we live with for many years.

They’re still labels.

But they’re not so bad because they’re not based on assumption, they’re based on our actual personalities or quirks. Sometimes we still don’t like them but sometimes we don’t mind.

Special needs labels

Labels associated with special needs are very rarely welcome ones because they are almost always based on assumptions, misinformation and stereotypes.

When someone uses the r-word in association with autism, I take that very personally because neither myself nor my son fit that definition. No autistics do unless they also have a separate diagnosis for exactly that.

See, if you were to call my son very particular or picky… I’d probably chuckle and agree with you.

It’s still a label.

But it’s one based on getting to know him and what he’s like.

Not all autistics are all that picky. Take me for example. I’m very go with the flow, not caring too much what others want to do as I can do it too, I eat just about anything… my son is the total opposite.

Labels don’t always hurt. Sometimes they are born of familiarity and if welcome by the individual… are acceptable.

One on one, when accepted, labels are ok.

Never any other time.

When made by a group, against a group, based on assumption, rumour or “information”… labels are not ok.

I leave you with this… from the man who played the ninth doctor in Dr. Who.

Doctor Who

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