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Find another way

By on October 17, 2012 in Autism

Cameron has started this year in a new, more academic class than last year. Up until now, he’s been learning a lot but the primary focus as been on building upon the things that he’s been struggling with. Things like his fine motor skills and socializing.

This year, he’s doing math and spelling tests. He’s also learning about mammals, reptiles and amphibians. It’s exciting stuff! And he’s loving every minute of it!

Well, almost every minute.

While working with him at home, I have him write out his spelling words for two reasons… one is so that he can learn them and do well on his spelling test but also, so that he can practice his penmanship.

My wife, Natalie, brought up an interesting point though, one that we’ve now mentioned to the school.

Cameron has a terrible time with his writing. He doesn’t like writing and he knows he’s not good at it. And it weighs on his mind.

spelling test

Missed the “r” in morning

Looking back at some of his spelling tests, the words that he got wrong or the mistakes he made were words and mistakes that he shouldn’t have gotten wrong.

For example, in almost all of his spelling mistakes, it’s due to him missing a letter. Not getting a letter wrong or mixing them up, he is leaving out entire letters.

Natalie is the one that realized that, he’s not getting the words wrong because he doesn’t know how to spell them (or sound them out), it’s because his mind isn’t on the word… it’s on his writing.

He knows that his writing doesn’t look good and he knows that he has to fit the answers in a little space on the page. So he puts in extra effort to be sure that the teacher can read it and that it looks ok… because, you know… you don’t want anyone to laugh at your writing. Yes, he worries about that.

So I brought it up with the principle yesterday and if all goes well, hopefully testing can be done, or at least made available, electronically. So that if a student prefers, they can type their answers, either at a computer or some device with a touch screen.

And we’re lucky. We’re so very lucky that this school is so understanding. As I brought it up, I could see the principle understanding exactly what I meant. When I said “when a child with autism starts to get flustered… ” he finished my sentence with “their whole day could be shot after that.”

Yes!!

Do I want them to stop working on his writing and fine motor skills? No, of course not!!

But I don’t want those challenges to get in the way of other things either. He knows those words. He knows the answers to the tests. And his anxiety over his writing skills should not be getting in the way of that.

The reason that I’m writing about this, is not just to illustrate what’s happening in Cameron’s life at the moment (although there is that too), it’s to provide an example where sometimes you have to be involved, be aware and when possible, find another way.

Parents, you need to recognize these things in your children. Perhaps they are being held back by something that no one else would ever be able to recognize. Perhaps there is some other way that may work well for your child. And most importantly, you have to try to provide some solutions.

Granted, as I said, we’re lucky. My son’s school is awesome. And not everyone has a school like his. Not all schools can or are able to accommodate a change like that.

But that doesn’t mean that you shouldn’t try.

If something isn’t working, or could be working better, you have to try to find another way.

Nothing can stop you, so long as you never stop trying to find another way.

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Everyone has their own heart song

By on October 12, 2012 in Autism

happy feet - mumbleIn 2006, a cute little movie came out that spawned a lot of fascination towards penguins. Granted, not many other movies or documentaries featured them singing and/or dancing. Still, Happy Feet went on to have enough success as to earn a sequel.

Since we haven’t watched it in my house in a while, I thought I’d put it on again for my boys, who are now 7 (Cameron) and just about to turn 5 (Tyler).

Right at the beginning of the movie, when little Mumble (the star of the show) is born, he starts to dance. He says he doesn’t know what he’s doing, he just can’t stop. His feet are happy.

This amuses my boys to no end and they get up and start dancing… er… well, what they call dancing. I’m sure my neighbor downstairs didn’t think it was dancing.

The movie very quickly went from happy to sad though, as all the other children began to sing, quite beautifully, while poor Mumble sounded terrible.

As Mumble failed and failed again to sing, his parents had this conversation:

Dad: It just ain’t penguin, ok?
Mom: So what if he’s a little different? I’ve always kinda liked different.
Dad: He’s not different. He’s a regular emperor penguin!

Are you starting to see why this movie is the subject of a blog post on an autism blog?

So while I sat there, watching this movie and thinking how familiar it all sounds and feels, it hit full force as the very last lines were narrated to close out the scene of Mumble’s childhood:

Pay no mind to his dancing heart. The kid saw out his school days at the back of the class, lost in his imaginings.
What fabulous worlds lay out there, far beyond the ice?
Was there any place where one small penguin without a heart song could ever truly belong?

It was at this point when Cameron looked at me, quite seriously, and said “He’s sad because he doesn’t have a heart song, right?”

What do you say to a child when you know that he’s asking because he feels like he is that penguin? Does he feel like that penguin? Has he drawn the same similarities I have? Is he really even following along that closely? Maybe he’s just curious like any other child would be? Am I the one that is putting too much of our life into what I’m seeing in this movie?

This is what I told him:

Cameron, he does have a heart song. Everyone has a heart song. A heart song is something in your heart that only you can hear. Those penguins, when they hear it, they’re able to get it out and express it through singing. That’s how they share their heart song with the world.

But little Mumble, he’s not able to sing. For what ever reason, he just can’t. And so his heart song comes out another way, through his feet. He dances. And he dances better than anyone else.

When you hear the music in the movie, but don’t see anyone around playing the music on guitars or drums, what you’re actually hearing is the heart song in that penguin’s heart. So when he’s dancing, he’s dancing to his heart song.

At this point, Cameron asked about us. “Do people have heart songs?”

I explained:

Yes, sort of. But it’s not always music. Some people are really good at drawing, cooking, running really fast, playing video games… we all have something that we love to do and we are very good at it.

That’s our heart song.

If someone really loves music and is really good at it, then perhaps they really do have a heart song. But if someone really loves riding horses and is really good at it, then that is their heart song… only it’s not exactly a song.

We all have one. No matter how different we may think we are or how much anyone else thinks we are, we each have a heart song. And it doesn’t matter if it comes out through our feet and people think it’s weird, so long as it comes out.

Because our heart song is important.

Sure enough, later in the movie, as Mumble ventured out and eventually found the aliens (humans), he failed at being able to communicate with them… that is, until he danced.

So I told Cameron “look, he can communicate with them now.”

Cameron looked at me and asked “What does “communicate” mean?”

Again, I explained to him:

Well, communicating is the way in which we tell each other something. Like, me talking to you. But it’s not always talking. Like, when you see a smile, you know someone’s happy. Or you see someone crying, you know they’re sad. They are “communicating” that to you.

In this case, Mumble was talking but those people don’t understand Penguin talk, so they weren’t communicating very well. They didn’t understand each other. But once Mumble started to dance, and the people all gathered round, they were communicating.

At which point Cameron asked: “So his heart song is how he communicates?”

Yes!! He gets it!

And sure enough, as the movie played on and the humans followed him back to the penguin home land and they all started to dance, he started to see how that one little dancing penguin wasn’t so “different” after all. That what made him different made him very special.

If it wasn’t for his dancing, he never would have found the humans, or communicated with them, and they would have ran out of food.

So no matter how different or weird or “not penguin” it is to find your heart song and to let it out, you have to do it anyway.

We all have one. And it’s special.

It needs to be shared with the world.

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The stick man

By on September 23, 2012 in Autism

cameron stick figuresCameron drew this great picture today. He’s really quite proud of it.

Can you tell what it’s a picture of? And who those people are?

I’ll let you know if you’re right at the bottom of this post.

The point of this post though, is that his drawing got me to thinking and for some reason, I just couldn’t let it go and it dawned on me that this is really very important.

The Stick Man

A circle for the head. A line for the body. A line for each arm and a line for each leg. That’s it. Big deal. Right?

Well, consider this; every single child, ever, has started out by drawing a stick man.

Most of you are probably thinking “ya? so?” while some others will be processing it for a moment to either form an argument to agree or disagree with that assessment.

A small, very rare portion, of you are probably dawning on just how significant that really is.

Think of it

When you stop and do the math on that, it’s really quite remarkable. Let’s say we focus on only the population we have now, not the population through out history. Just the people on Earth right now.

That’s just over 7 billion people, living on several continents, in hundreds of countries, with a variety of skin colours and languages, rich and poor, religious and not, special needs or not, high and low IQs… everyone!! And they’ve all (or at least very close to all) drawn a stick figure. Whether it’s in the sand, in stone, on paper, an etch-a-sketch or what ever means they have… children draw the stick man.

Sadly, this isn’t a post about world unity, give peace a chance, joining with our brothers and sisters and so on.

No. It’s about you. You and your child.

The first step

The real significance in this is that this is a common first step in what becomes a world of endless possibilities. Some of those children become astronauts, athletes, musicians and the ones that really love those stick men continue on to become artists.

But when you think about the greatest people in the world, whether brilliant or athletic or seemingly “born with talent” individuals, they all sucked at drawing the human form!

Even those who go on to be widely regarded as the greatest artists in the world, sucked at it at first.

The last step

I also consider the stick man as the last step in what makes us all the same.

From that stick man on, we stop doing the same things that everyone else on the planet has done. We keep on drawing or we find other interests. We persevere or we give up. We make decisions every single day that forever shape and alter our lives in ways that have never happened to anyone else, ever.

It’s humbling to think that we all started out with the same talent (or lack of talent, depending on how you view a stick man) but it’s also monumental to think that it’s the last time that any of us will ever do something that every single other person has done too. (I mean, aside from bodily functions and other such humanity type stuff we need to do)

Possibilities

When I look at my son’s drawing, a bunch of stick man figures together, I think of all the people that came before him, doing the same thing. How their parents must have admired their work too. How they must have progressed from that stick man to works of art that became priceless.

I think of presidents, rocket scientists, athletes and everyone else in the world that all started out with a stick man on a piece of paper and how they started out just like my boy.

No, not everyone has the same support in life along the way nor does everyone have the same challenges but in that stick man drawing is a beginning. And it’s a very big world and there are going to be many, many more steps taken after that first one.

And if any of those other people can go from a stick man to becoming anything they want to be, then so can my boy. So can anyone!

So when your child draws a stick man and hands it to you and says it’s you, or your spouse, or a friend or what ever it is… don’t just say “that’s nice” and put it on a shelf or in the recycle bin.

Really look at it and appreciate what’s coming next. Whether big or small, record breaking or not, what comes next is the rest of their lives and it’s going to be amazing!

The Answer

I did promise to tell you what it was that my son drew in that picture. I didn’t forget.

It’s The Avengers!

Hulk, Iron-Man, Thor, Captain America and some pink girl he decided had to be the villain.

 

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Crap or Cone

By on September 21, 2012 in Autism

One of, if not the, most positive people I have ever had the pleasure of meeting is a pink haired, very flamboyant man named John “Halcyon” Styn. In the time I had known him, or known of him, he had never been involved in any drama, he never seemed to be where problems were or bad things were going down… he just always seemed to have a smile and was always happy to see you. Even if you’ve never met him before.

Recently, he gave a TED talk. If you have never heard of TED talks, I highly suggest you take some time and sit and watch some. The top minds in the world give short talks that will forever change your perspective on life.

John’s talk is one that may do just that for you as well.

It’s less than 17 minutes (which in the world of autism parenting is a LONG TIME) but I ask that you set aside the time today to watch this. It’s important. Honest.

And when you’re done, continue on reading below the video.

The entire discussion is so powerful and there really is a lot to take in but my focus, right now, is on one very important aspect of life; you have to ask yourself, “crap or cone?”

Essentially, you can focus on the crap and spend all your time thinking about it, talking about it, living in it… or you can focus on the cone and cherish it, enjoy it, share it with others.

What it comes down to is, both methods will get you results. But one might get you the results you want while the other will likely get you the results you want so desperately to avoid.

To put it another way, if you are always seeking the positives in everything… eventually that’s what you will find. But the same is true of the negatives.

And it’s hard to do. It’s so very hard to do when the deck seems stacked against you. When things just seem to keep going from bad to worse. That’s true of anyone and even more so when autism or other disorders or disabilities are involved.

But the same principle holds true. In fact, I’d argue that it’s even more true.

Autism can be hard… very very hard. I won’t deny that.

But that still doesn’t change the fact that what you decide to focus on will dictate how much enjoyment you have out of life. It will determine what your life will look like when you look back on it years from now.

Here’s a hint: when that day comes, when you think back on all of what your life once was, if you had focused on the crap, you’ll remember the diagnosis, the therapy, the schedules, the chaos, etc but if you focus on the cone, you’ll remember the child.

It’s easy to forget that it’s within our power to make that decision, especially when things seem so out of our control. But we do.

It’s a choice.

It’s your choice.

What will be your focus?

Crap or cone?

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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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