Tag Archives | help

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.

Comments { 7 }

How Mario taught me just how much help to give to my children

By on May 6, 2011 in Autism, Parenting

There are a lot of different parenting styles out there to match a lot of different types of parents. One of the biggest and most obvious differences we see in each other is how much we try to “help” our children.

HelpI put that in quotes because we do all try to help (there are some parents that don’t but that’s another matter). However, some of us don’t do enough and some of us do too much… both of which probably isn’t really helping at all.

If you never help your child, you’re teaching them to be independent but you’re also teaching them they that they can’t depend on you at all. If you help them with everything, you’re teaching them to be dependent for life and never be able to fend for themselves.

There needs to be a healthy balance and I think I’ve found it… in video games.

Mario Dad to the rescue

I’ve posted several times about how my son loves Mario and even how it’s been quite beneficial in his development. It wasn’t until recently that I realized another way in which these games help him… and it’s then that it dawned on me how I can best help him.

In my house, my wife is almost as much of a Mario fan as Cameron is… I’m a fan too but I prefer the much more difficult games, I like the challenge.

As such, when my son gets to a level or a boss that has him stumped, he immediately asks for help. If my wife is unable to help, they call on me and I pick up the controller, beat it and go back to what I was doing.

As I said, it got me to thinking about helping our children in general.

Helping – In the game

The game is a challenge, it’s difficult. Most of it he can manage on his own, he can figure it out. He learns problem solving skills as well as hand-eye coordination.

When it gets too hard, he tries several times but fails. I join him, watch him try and then try it myself.

If it’s a level thing, I do the hard part and promptly give him the controller back to finish the rest of the level himself. If it’s a boss, I just beat the boss and let him collect the reward and move on.

He watches me… 9 times out of 10, this helps him to return to that level or boss and beat it himself next time.

Helping – In real life

Life gets pretty hard sometimes… it’s all relative. For a 5 year old, having to finish all your veggies before you get ice cream is about the equivalent to me having to finish the dishes before I get to watch a movie.

Anyway, sometimes a child (even our adult children) get to a spot in their lives where they’ve tried but are unable to move forward.

He tries several times and fails, I see what he’s trying to accomplish and then I do it for him. Keep in mind, if it’s an issue, just like a game level, I help him overcome the task and give him back the controller to finish the rest.

I give him the exact amount of help necessary to over come the obstacle, making sure he understands what happened so that, should he encounter it again, he can over come it himself, and then I go back to what I was doing before.

Helping – Just the right amount

Your children are going to learn all about failure. Failing is a part of life. You can’t just let them fail at everything they do so that they become stronger but you also can’t protect them from failure for ever either.

Also, if you want your children to help people later in life, you’re going to have to show them how to help. And your children do learn it.

If you do it all for them, the only thing they’ve learned is to keep asking for help… in everything they do.

Not all of us are video game players, but we all have the capacity to help out… thinking about it in terms of those Mario games helped me to strategize and put into practice the way that I can help my children in all things.

Obviously, not all situations will be that simple but I think it makes for a good base for how I approach most situations where my boys need my help.

Do you try to balance how much you help? Do you know parents that over or under do it?

Comments { 2 }

A Challenge to Tony Robbins: Get Involved in The Autism Community

By on July 31, 2010 in Autism

Yes you’re a great motivator and the inspiration guru to the stars, but I’d like to see you step up to a truly great challenge and get involved in the Autism community.

Let’s face it, motivating people that seek you out (so there’s already something there that they’re just waiting to hear) and are readily able to pay for the tickets to your show, or ebooks or premium services on your site or what ever else… that’s all well and good… but it’s not a real challenge for a man like Tony Robbins.

I want to see you walk into a house and prevent something like this from happening: Murder Suicide Involving Mom and Son with Autism

I’d like to see you contend with children that won’t look you in the eye, that won’t answer your questions, that throw a tantrum at the drop of a hat… I want to see you talk to the parents that give up their cable, telephone and other luxury expenses to be able to afford their child’s diet and therapy sessions and try to motivate them.

Mr Tony Robbins, I really do like your work, honestly I do… it has no effect on me and I don’t feel inspired in the slightest however, but that’s not your fault… it’s mine. I know that I’m not the only one though, I know that there are many of us that know that our children will never be able to attend your seminars because they would never be able to handle being in a crowded room of screaming people with lights, sound systems and everything else. I know that many of us would never be able to afford the tickets anyhow.

I also know that it’s not a good business decision for you to get involved in the Autism community because no one makes money helping people that have no money. It’s good for public image but between you and I, I know you don’t need much help with that anyhow.

All the same though, I’d still love to see you get involved. I’d still love to see moms and dads and lonely people with Autism brought back from the brink and helped out by those who have the ability to do so.. you are one such man.

We don’t need a spokesman, we don’t need a celebrity to bring awareness, we need honest to goodness support and compassion… quite simply, we need help.

We’re the Autism community, we support each other and try to pass along words of encouragement knowing no one can see our tears while we sit at our computer keyboard…  but if that news story and the dozens like them are any indication, we’re just not strong enough. There’s too much to live with, too much to deal with and, because this is our children we’re talking about, there’s too much at stake.

You talk about challenges during your seminars, well… I’m putting this one out to you, because I respect you and I think (in the extremely unlikely event that you should ever even read this) that if anyone could say the words necessary to stop news stories like that from becoming more frequent… it’s you.

What do you say?

Comments { 10 }