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Those Far and Few Between “Perfect Moments”

By on July 12, 2010 in Autism

Cameron and his little brother Tyler share a room which often means staying up well passed their bedtime talking, giggling, playing… for the most part, I don’t mind so much because it’s the most well behaved co-operative play they have all day. But eventually it gets too late and I separate them, putting one child in my bed and the other stays in their room.

Tonight, however, Cameron told me that he wanted me to stay in the room with him because he didn’t want to be alone. He said he wasn’t scared, he just didn’t want to be alone. This was the first time that he said that and while I am a firm believer in being there for him as much as I can, I also don’t want to start anything that might become a ‘habit’ or a ‘need’ in the future.

So I tucked him in, said goodnight and headed back to the living room for a quiet evening, watching a movie with Natalie (my wife).

About half way through the movie, I heard Cameron call out to me and so I went to check on him. He was on the floor, rolled up in his blanket with his head on his pillow, asking me to stay with him. This time, I did.

I laid down next to him, on my side with my arm under my head for support and my other arm down on the floor in front of me. Cameron laid down as well and kinda snuggled up to me a bit like how he does when someone asks him for a hug. He just sort of leans into you.

After a few minutes, I thought maybe my slow breathing and motionless sleep simulation might help him get to sleep but it turns out that he was thinking the same thing. He leaned back, looked at me (not being able to tell that I could see him because it was so dark) and then he nestled in closer to me with his face directly under my nose and his hand on top of my hand. He must have felt every breath I took and for him to put his hand on mine was… well, it was perfect.

So again, I laid there for a bit until eventually he kind of rolled onto his back and I started to get up to return to my wife who was waiting ever so patiently with the movie on pause all this time… and as I got to my knees, he opened his eyes and looked at me.

I put my hand on his head and said “Good night buddy, I love you” and he, still looking directly at me, said “I love you daddy” and then curled up and fell asleep.

Even if your child or children don’t have Autism, those moments are still pretty amazing but if you do have a child or children with Autism, you know just how truly extraordinary it is. For most, it’s extremely rare and for many, those moments never do happen.

I am a lucky one, they’re rare, but when they do happen, they’re perfect.

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You Can Shine No Matter What You’re Made Of

By on July 11, 2010 in Autism

So I have tried to get Cameron to watch the movie “Robots” since he was really little, thinking the colours and over the top action of the film might catch his interest but it’s always had quite the opposite effect.. he wanted it off. It really kinda of disappointed me because this movie has one of the best messages I could ever want to convey to him.

You see, in the movie, this spare parts, old robot that is a dishwasher in a restaurant has a child and is so down on his luck that his child always gets hand me downs, even from female cousins. However, when it comes time that his child wants to head off to the big city with big dreams of becoming an inventor, instead of listening to his wife and ordering him to go home, he buys him a train ticket and tells him that he has greatness him in and to follow his dreams no matter what.

All of this comes from Bigweld, the “greatest robot there is” that believes that all robots have something to contribute, “whether you are made of new parts, old parts or spare parts, you can shine no matter what you’re made of.”

It really hit home with me from day one but has so much more now that I see my child overcoming huge challenges due to Autism… the fact that, even though he’s not a shiny, top of the line, brand new robot… he can still shine.

I tried again last night, it’s been a while since I’ve tried…. and he actually sat through it all and enjoyed it. He certainly didn’t get the message, nor walk away pretending to be any of them like he does Woody and Buzz.. but it’s certainly a start.

I think it’s a very important message, not just to the children but to the parents as well… don’t ever tell your kids that they can’t do something, or that something is out of their reach… or that because they have Autism, they’ll never be great. The fact is, no matter how hard it is right now, how bad it is or can be, there’s a whole life time ahead where anything can happen! There’s a whole life time where, if they believe it, if you believe it… anything can happen!

“You can shine no matter what you’re made of” is not just a catchy line from a movie, it’s the truth.

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Caused By Autism or A Normal Childhood Quirk?

By on July 10, 2010 in Autism

One of the issues with recognizing Autism in your child, and with having your child diagnosed, is knowing what are true symptoms and what are just things that some kids do… for example, walking and talking late. Some kids just do that. Flipping over their cars and spinning the wheels, some kids just do that. Not wanting to eat most foods… most parents will tell you that it’s a chore to get their kids to eat a lot of the time.

So then you get the diagnosis and you start getting the education, doing the research, going to the appointments… and as the years roll on, you still find that you are constantly asking yourself: Is this due to the Autism or is this just something he is doing?

My latest example of this is Cameron’s constant repeating of everything his little brother says. He sometimes even repeats my wife and I. It’s something that seems like it could be something that he picked up at school, it seems like he could be doing it simply because he thinks it’s funny. And I do remember the repeating game, where you repeat everything that someone says until they just get so furious that they storm off.

I decided to ask around and was told about Echolalia. And there it was, an in your face answer and yet, still no real answer at all…. is he doing this Echolalia or is it just something he’s doing to bug us.

Given that it has a name and is specifically attributed to certain individuals, including Autistics, I can’t help but think that I was right to ask around and try to find out.

Even those who’ve been dealing with it for years, even the experts are sometimes presented with a symptom of Autism that they might simply mistake as a child or person being quirky.

The safest thing you can do is, if you question it, then ask questions about it. If something persists longer than a day or two, or a week… if something seems like it’s come on pretty strong quite rapidly… if it seems like it could be a quirk but might is possible that it could be due to the Autism, ask!! Whether it be on a forum, a social networking site, the therapists you work with, even just your doctor… ask around.

If it is something relating to their Autism, chances are they’ve heard of it, dealt with it and may even have some solutions to help you through it. But if you just sit and wonder… you’ll never know.

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Turning 5 Means New Big Boy Responsibilities

By on July 7, 2010 in Autism

I am in no way eager for my boys to grow up but a strange thing happens to you when your child falls behind in development, whether it’s due to Autism or anything else… you want them to not just catch up, you want them to surpass everyone…  but still not grow up too fast!

Cameron will be turning 5 at the end of July, it’s coming up fast… and so I’ve started to talk to him about things I’ll expect once he’s a bigger boy. It’s kind of funny because I picture these conversations happening again when he hits his teens and he’ll be dreading every minute of it, but for right now, he’s so eager to be a big boy that he can’t wait for me to add more weight onto his shoulders!

Now, these sorts of things will be different for everyone but for my boy and me, these are his new duties:

1. I expect that he will take his own bites of his food and do it without the need to be reminded.

It sounds pretty simple, it also sounds pretty hopeless by most children’s standards really… but he is really quite responsible, just in a different way, so I know he can do this. As it is now, because he needs to be doing something at all times, he comes in for me to give him a bite when I call him, and then disappears again to play until I call him again. This system does work well but often times it leaves him lagging while his 2 year old little brother finishes his own plate on his own and gets a yummy dessert sooner. This frustrates Cameron and a meltdown ensues.

He can see that his 2 year old brother that can’t count, or put on his own shoes or get the colours quite right yet is able to eat entirely on his own and get dessert faster… so he knows full well that he can do it too. He’s knows that mom and dad take their own bites and finish sooner as well.

So he now knows that when he’s 5, I expect that he’ll be able to do it as well, and he has no objections… so far. We’ll see.

2. If you put something down, and later can’t remember where you put it down, it stays lost until you find it yourself.

This is a pretty common thing for all children, you offer them something and they just drop what’s in their hands and let it fall where it may. Last night, I gave him his cup of chocolate soy milk before bed and said goodnight. A little while later, because it was so hot, he moved to a cooler room to sleep and asked for another cup. I asked him where his cup was and he said he didn’t know… implying I should just go find it.

I sat down with him on the bed and gave him his big boy responsibility number two… mommy and daddy can’t be expected to just find things for him. He’s lost some toys that he wishes he hasn’t, they’re no longer coming back. And he’s old enough to understand that… he knows that they’re not in the house, there’s no finding them. And he knows that they’re gone because he put them down and couldn’t remember later where that was.

Obviously, I don’t expect perfection, everybody has put something down at some point in their life and forgotten where it was. Keys? cell phone? sunglasses? Anyway, I don’t expect he’ll always know but I want him to work on it, things that are more routine like that night time cup should be put in a place where later, when I ask, he can easily get it or tell me where it is because he’ll remember.

As a parent, it’s hard… you don’t want your kids to go growing up too fast, but it’s also frustrating having to always find their stuff, always having to feed them forever.

I think it’s because I know that for some parents of more severe Autistic children, they’ll never get to a point where they can stop feeding their child, their child will never ever remember where they just dropped something… it’s because those parents would love for nothing more than to have even the simplest responsibilities demonstrated by their children that I have to work at making sure my child does.

For example, Cameron is doing very well despite having Autism, but when I see another parent who doesn’t even bother to teach their child anything because they figure the school will do that for them… it makes me furious. How dare you take advantage of that, how dare you take something simple like taking a few minutes to educate your child for granted when it’s so much harder for us to do and we still do it anyway!

Anyway, you get my point… I push for big boy responsibilities in my child because I want to see him progress, to catch up, to exceed and I do it because I know he can, I know I can and I will not ever take it for granted, nor let him take it for granted when so many are unable.

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Toilet Training a Child With Autism

By on July 5, 2010 in Autism

I’m sorry, but the title just seems funny to me. The reason I used it is that I’ve seen many other articles on this subject and really, most aren’t all bad but some just make me cringe. Here’s why…

I’ve written many times already in the short life of this blog, that no two Autistic people are the same… that you have to handle every single person with Autism differently because their symptoms and issues are usually very different. Then you come across these articles which tell you what you “need to do” to toilet train your child.

With that out of the way, I will share with you what worked for my wife and I, it was really quite funny.

My son had just turned 3 was starting to get his words together, to actually be able to communicate, thus, able to understand a little better, I think. We felt that this was a perfect time to put in an honest effort, not just due to his level of understanding but because he was larger than a 6 year old and we were running out of diapers sizes in his size.

Cameron was obsessed with the Cars movie, with Lightning McQueen and Mator… he could watch that movie 3 times a day, more if we let him. So, while visiting my mom in the US (I am Canadian), we visited several stores and found that there are a LOT more toys available in the US than there is here.

So we bought every one we could find and filled up 3 bags worth, as well as a couple of bigger toys including Mac the truck and a parking garage.

We showed my son all these toys which, I’m sure you can imagine, excited him a lot! So we placed the bags on the back of the bathroom door and placed the bigger toys on the floor in front of the toilet.

We sat him down, on the toilet and while he was trying to catch a glimpse of every single car in each of the bags, we explained to him “Cameron, every time you go pee into the toilet, you get a car from the bags… every time you do a poop in the toilet, you get a big toy like Mac.”

Apparently his level of understanding was much higher than I had thought at the time, for wouldn’t you believe, he would rush off to the toilet every 3 minutes! I kid you not, he must have been in and out of that bathroom 45 times that day. He went to bed defeated but didn’t make a fuss about it, but it certainly was in his mind because when he woke up, he was eager to run to the toilet again. A couple dozen times more that day and then it happened… a trickle! It took a while, but finally a trickle hit the water in the bowl and so, for that tiny little piddle in the puddle, he got a brand new car out of the bag.

The next day he got several cars, the next day more cars, the next day…. only 3 days in, he got Mac the truck.

By the time the week was over, he had every single car from all 4 bags and never once wore a diaper again. And he wasn’t sad in the slightest that he didn’t get a reward after they were gone either… yes, I feared that the day would come when he’d be expecting the rewards to keep coming forever. But that didn’t happen because he sat there and watched the bags empty, he knew when it was done.

On our drive back to Canada the following week (that makes 2 weeks later now), he had an accident in the car and broke down crying… he felt so devastated, so bad… that he didn’t pee in the toilet.

It was truly remarkable at how quickly he took to it, even more remarkable at how important it became to him that he never pee anywhere but a toilet ever again… in fact, he won’t even pee outside on the side of the road or anything.

Now, I know and understand that I’m a lucky one, that toilet training simply is not that easy for everyone, I also understand that for Autism, you’re not supposed to feed an obsession like that, I also understand that you’re not supposed to bribe your child to accomplish these things…. man, I sure am breaking a lot of rules/trends, aren’t I?

That’s the thing, there are no rules, there are no right and wrong’s… you know your child better than all the article writers and professionals in the world. That’s not to say that you shouldn’t go out there and look for advice and new ways to do it when all the things you’ve tried won’t work… what I’m saying is, don’t shy away from trying something just because someone somewhere said it was some big no no, that they’ll look down on you for it.

I knew my son would love those cars, I knew that he’d be willing to pee in a toilet for them and I was right…. more so, he surprised me at it!

Was I a lucky one? Or did I not listen to the nay-sayers and just did what I knew would work for my situation? Hmm….

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