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.

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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!

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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.

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Reality vs Fantasy – Autism Chooses… Fantasy

By on June 1, 2010 in Autism

In Cameron’s case, he much prefers fantasy over reality because it helps him to do several things, including blocking out various things in reality that overwhelm him such as sounds, sights and smells. Also, it gives him control which is ultimately why anyone likes to day dream… he can get the specific answers he wants back to his questions if he’s asking an imaginary person.

I’d like to give you an example from this previous week-end, Cameron found a stop watch that looked somewhat similar to a cell phone. He knew full well that it was not actually a phone but for him, this gave him the opportunity to phone his grandmother and talk to her. He asked when she was coming to his house, what she was doing and had a full conversation.

Afterwards, I actually did call his grandmother and he absolutely refused to say a single word into the real phone. When I put the phone near him, he bent right over in order to avoid having it anywhere near his face and ear.

Many times we’ll ask Cameron if he wants to go outside, or to the park, or the beach… any number of places that we know he really enjoys and most often times he’ll say no. He’s quite content to just grab a couple of toys and pretend they are something they’re not but once we drag him out, he has a great time and doesn’t want to come back in.

Once put into the position he’s fine, but given the choice before hand, he’d much rather stay in his own fantasy world where he has control and feels safe.

Given that I’m older, not Autistic and have a better understanding of the world around us…. I can’t blame him for choosing fantasy.

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How Does He Remember That?

By on May 31, 2010 in Autism

When Cameron was only 1, I used to place a ball on my head and let it roll off onto the ground. This amused him and so I would have to do it for hours. That got old quick and time passed just as quick and suddenly my 3 year old boy came to me one day, with a ball and placed it on my head and let it roll off and laughed. 2 years had passed but he remembered it as if it was yesterday.

Fast forward to a 4 year old going to school for the first time, it’s September and he speaks to no one… he’s scared, he doesn’t understand why he’s separated from his parents and doesn’t know who those people are. They cover a lot each and every day, reading stories, learning numbers, letters and more… it’s really quite overwhelming for all of the children but they handle it well.

By April, all of the students are pretty well adjusted to the routine and they are all friends and everything is going just fine. The teacher pulls out a book that they hadn’t read since that awkward time back in September and begins to read it. Cameron perks up and not only remembers the book, but he remembers each page… he remembers who is in it, what happens to them… everything.

The teachers write back to us at the end of the day asking us if we have that book at home because he knew it so well.

Does this mean he has a photographic memory? I don’t think so, but I do think he’s able to file them much better than we can… where a pleasurable memory, one that he wants to keep close to his heart, is easily recalled any time later.

Ask him to remember someone’s name, or what someone had said and he’s not as capable… probably because it’s vocal and not visual. However he can also have trouble recalling visuals that he has no interest in.

How does he remember some things so well? I don’t think I’ll ever really know but it is strangely comforting to me to know that the really great times that we have together will never be forgotten, ever.

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