Archive | June, 2010

Autism, It’s What My Son Has. Not The Other Way Around.

By on June 7, 2010 in Autism

There’s a lot of controversy around this video that was put out in which Autism was made out to be a man, a predator, who was preying on our children… kinda creepy but for me, it really made me think about how those so disconnected with Autism must think. I know for many, it’s how they think of cancer, or other stranger issues like flesh eating disease. These are things that attack people, they move in, attack, grow and take over. I think for some people, it’s just easier to think of Autism in that way.

The truth is though, there is no growth, there is no outside entity moving in. It’s something you just have, it’s a part of you. For all it’s good (savants) and bads (violence, lack of communication), it’s just part of what makes you who you are.

I recently ‘tweeted’ a simple line that came to me after watching that video: “Autism, it’s what my son has. Not the other way around.”

And I couldn’t help but think to myself, why don’t I make more of an effort to convey that to people when I’m describing to them how my son is. He’s every bit the normal little boy that every other child they deal with is. He just has some foods he can’t eat, like other children with allergies would, he has some issues with being overwhelmed or over stimulated, I had the same problem as a child, I’m not Autistic.

Autism is something that forces me to have to give people certain ‘tips’ and things to look for when they get to know him. They don’t have to put on a breathing apparatus or wear rubber gloves for fear of catching it, and they don’t have to completely alter entire systems or routines to suit him. They just need to be aware of a few things and all will be fine.

Some parents are not so lucky, I know this… and truly, my heart goes out to you because I can’t begin to imagine what that would be like. But for those of us who can get our child to talk, to be a part of the things we do… remember, they have Autism, they have issues, the Autism doesn’t have them.

Comments { 0 }

The Hardest Part of Autism – Looking To The Future

By on June 4, 2010 in Autism

I’ve had some people ask me what the hardest part is of having an Autistic son is and I kind of want to smack them. Don’t get me wrong, it’s a fair question but really, it’s an extremely overwhelming question.

Let’s see, we’ll start with the basics like his refusal to eat most foods, he’s never touched meat of any kind and then add on the fact that the stuff he will eat, he can’t because it makes him out of control. Then there’s his constant temper tantrums, more so a year ago than now but still happen. There’s his constant sadness as he comes home from school telling us how he has no friends. There’s the fear we have any time anyone anywhere ever has to take care of him, whether it’s family, baby sitters, teachers, sunday school teachers… anyone. Please don’t enrage him, please don’t feed him! There’s the stress that goes into every outing… right now we need to go on a week long trip, we have no idea how we’ll feed him since hotel rooms and restaurants aren’t his best situations to be in. Then there’s the financial burden, not only is there $150/hr speech therapy sessions but simple things like gluten free food cost a lot more than normal groceries. Let’s not forget that we picked up and sold our house, at a loss, to get him to a city where there’s a school that is perfect for him. That’s a good start….

On top of all of this there’s one thing that is actually harder than all of that, one thing that my wife and I have sat down and discussed many times and laid awake at night thinking about…. Cameron’s future.

I think most parents think about their children’s future quite a bit, most dream of great things and have their worries. It’s safe to say that most parents simply wish for their children to have a better life than they did themselves.

However, when your child is Autistic, you have a whole other world of uncertainty added on… one where the dreams fade a little, one where the hopes of a better life become more a matter of hope than desire. When your child is Autistic, all you want for them, is to be normal.

I think some parents pray for a savant, a child who’ll find that one truly amazing and indescribable talent that will bring the media running and make your child a prodigy… but I think most parents, like us, only want for our child to be able to grow up happy, to be able to finish school, have friends, get a good job, have a family of their own and all those good things that many people simply take for granted.

I think, for me anyhow, the hardest part is looking to the future and thinking to myself, what if he doesn’t have that? What if his life only gets harder? I mean, having no friends is hard at the age of 4 but it can make a teenager suicidal. What if he never has a family of his own? No one to love, to care for him other than his parents?

We can sell our house at a loss, we can handle the craziness when someone slips him a cookie that he shouldn’t have, we can handle the tantrums and the sadness… we can even handle having to eat mr noodles for a while to make sure he gets the things he needs… but looking to the future is something I can’t really handle. It’s something I don’t like to think about.

I’ve learned that all I can do is put it out of my mind and focus on right now. I just have to keep eating those mr noodles, keep helping him through the tantrums, keep getting him into the schools and programs he needs and maybe, just maybe…. hopefully… the future will sort itself out. Because if I spend all my time dwelling on what’s hardest, I’ll miss what is the best…. and that’s here and now.

Comments { 0 }

Sensationalizing Autism? Hard to Believe, But it Happens

By on June 3, 2010 in General

I think, sometimes, we forget about just how bad it really can be. The first thing you’re told when your child is delayed in speaking is that Einstein didn’t talk until he was 4. Then we hear about other amazing ‘savant’ Autistic people, even watch the Temple Grandin movie and start to think that maybe it’s not such a bad thing.

Then you get out into the Autism community and start talking to other people and even discover people with Autism themselves, discussing, sharing, informing… being involved. Many of whom are very proud of being Autistic actually, they recognize that they’re not less than anyone else, that they actually have advantages even over some people.

When you’re not doing that, you’re doing your own family thing with your own Autism issues and you get excited when your own child hits milestones, reaches achievements and so forth.

You can very easily get lost in it all because those that are unable to speak, those that are unable to leave the house without being in danger, those who have extremely stressful situations at home with their completely out of control children…  we don’t get to hear from them. They don’t get the time to join communities or to share experiences. Many of whom don’t even want to share because it’s simply too hard.

I think we can very easily sensationalize the very thing we’re all fighting so very hard against. We get so caught up in all the wonderful news, in all the good that can come of it that we easily forget just how ugly and terrible it can really be. Out of sight, out of mind, right?

I was recently watching twitter and a few sites where people with Autism themselves were expressing how proud they were but more so, going on about how others should be proud, how they are fully capable of everything that anyone else is capable of… and I couldn’t help but wonder how much that would hurt those parents out there who’s children simply never will be capable of much, much less everything that you or I can be.

How hurtful would it be to watch your children hurt themselves and constantly be in a rage… and then hear this person go on and on about how wonderful it is?

I don’t know what I would suggest to either as I certainly would never want to suggest that the person not be proud and not be loud about it. I mean, shout it from the roof tops if you’re capable! It’s truly wonderful.

I guess we just have to be sure that no matter how proud, how happy, how amazing the accomplishment, no matter how sensational it can seem… there is an ugly side. There is a reason that Autism needs to be prevented.

We fight for our children, we fight for ourselves, we fight for those who have yet to be diagnosed… but most importantly, we fight for those who can’t fight for themselves. Those who are either lost within their own minds or too busy doing everything they can for their children that they can’t be out there fighting for everyone else.

When you talk about Autism with someone else, either casually or in the Autism community, remember those people and the people who are happily having children that may soon discover that their lives will be harder than they ever dreamed possible.

They need our support even more than the rest of us, even though their voices may be the quietest.

Comments { 0 }

Learning So Fast He Shocked His Teacher!

By on June 2, 2010 in Autism

We just received a letter in Cameron’s backpack from his teacher. The letter read:

Hi Natalie & Stuart,

This was our morning message on Monday. Some days I have the boys provide the ideas for the sentences & this is what they came up with. After reading it through together, I got an older boy to read it. Then Cameron asked to read it by himself & was able to read all of it except the 4 words underlined.
Good reading Cameron!

This was the message on the board:


Happy Monday,
Cameron slept at memere’s house.
*boys name* is going with Mummy and Papa to get his casts back on.
*boys name* has no more training wheels!
*boys name* went to Sudbury.
*boys name* went swimming in Grandma’s pool.
Love, the La Casa boys
xxoo
* I removed the names of the other boys

Now, it’s not a huge shock to us or to his teacher that he can read the traditional beginner words, such as hat, cat and other words like that. (yes, I know I rhymed). What was a shock was when he volunteered, on his own, to get up and read all of that, entirely on his own and nearly got it all right!

I’m super happy just that he volunteered on his own, that he spoke up, that he wanted to do something that could have been potentially embarrassing in front of everyone!  But it blows me away on a whole other level that he can read “training wheels” and “grandma” and all those other words on his own!

Now, granted, some of it may have been fresh in his memory, they had just read it but also, keep in mind that these morning messages are new every day.

To watch him read, he’s just so very eager to be the one reading the stories himself. He has always been that way. I still have a video of him reading a story when he was 3… he didn’t even look at the words, he was just reciting from memory. But in his mind, he believed he was the one reading the story.

At this rate, he’ll be reading the Harry Potter books by the time he’s 6! And you know what? I firmly believe that if anyone could do it, it’s Cameron!

Comments { 0 }

Have Patience – Routines Are Hard Enough to Change Without The Autism!

By on June 2, 2010 in Autism

Imagine having something set in stone in your life, something you’ve done since you were a child… no matter what happened, you never missed it, or if you did, you were thrown off for the whole day. Now imagine someone asked you to stop, or change it…. right now!

I think that would be a pretty overwhelming task for even the strongest willed of us, humans are pretty good at being able to adapt but I think it’s safe to say that we’re really routine based creatures. We all go to school, we all work, we all live in this wacky social society system we’ve built up around ourselves.

Now imagine that your brain is wired differently where any slight deviation from your regular routine sends you into a turmoil of raw emotion that you can’t understand, much less control.

I can’t even pretend to know what that is like even though I witness it first hand from time to time.

You see, my son is about to turn 5 and he is Autistic. You have to understand that to a 5 year old, a routine that’s lasted 2 or 3 years is pretty much the majority of his life, certainly the portion of his life that he can remember clearly.

The reason I bring all this up is that many people forget what it is they’re doing when they ask a child to stay up later, walk a different route, take a different bus… even to have something else for breakfast because you’re out of their favourite cereal!

Routines take time to change or break, for everyone. But for an Autistc person, it may not be possible at all, but if it is, it will take even longer. Routine is the foundation to a clear mind, feeling safe and feeling in control.

The trick in all of this is to make others understand, to have others realize the difficulty involved. Even the ‘experts’ that recognize this, sometimes simply forget, or don’t realize the impact of their actions. One big area this affects many children is at school as it can be quite the dynamic setting.

Cameron’s teacher and helpers are really great and they write into a daily journal to let us know everything that happens, but one time, they let something slip through the cracks… we noticed a behavioural difference in Cameron but didn’t know the cause. It wasn’t until a while later that we were told that the Autistic children were moved from a private small area to play outside to the common large public area to play for their recess.

They thought they had told us but it never made it into our book… and so some time later, we finally realized why it was that Cameron was behaving slightly different lately. Once realized, we could address it and help him to understand and feel comfortable with it.

As with anything involving an Autistic child, don’t take anything for granted. The smallest detail to you and I can be very important to them.

If a routine must be changed, be prepared to have a lot of patience. Be prepared to be very understanding. Be prepared to weather a storm. Because you’re asking a lot from them, more than you may realize. The sooner you respect that, the better it will go.

Comments { 0 }