Archive | July, 2010

When Your Child is “Too Different”, Even By Autism Standards

By on July 15, 2010 in Autism

When Cameron was diagnosed, almost 2.5 years ago, we asked if it was Aspergers or something else and they just said “nope, it’s just Autism… he’s just on the spectrum”. They gave us the diagnosis in writing with numbers and information that made very little sense and were basically told that he is “moderate to severe”.

Later on we came to realize that, unlike most Autistics that don’t like to socialize, Cameron very much needed to socialize. In fact, he won’t even play his video games unless he has someone to play with him. He loves to have friends come over to play with him and he is always eager to share secrets and information with anyone who’ll listen. He’s what I call the anti-Autism boy. He only does things on his own when he’s overwhelmed and needs a break.

Now we come to therapy sessions where we’re told that he’s the “most inconsistent” child they’ve met… that he doesn’t like the things that every single other child they’ve dealt with does like, that he likes some things sometimes and not other times… they just don’t have any idea how to help him.

For the most part, I can’t complain too much. Cameron is a very well behaved boy, he is very smart and he has even been learning quite well how to reel back his emotions to get them under control.  However he does still have Autism. He does still need help.

It’s just frustrating not having answers… no ‘real’ diagnosis, no concrete solutions for therapy, no guarantees.

It’s funny though, if he didn’t have Autism, I think the last thing I’d want for him is to be normal, to fit the mold. I want my boys to stand out and be different. So maybe I just need to keep that perspective despite the Autism. Maybe it’s for a reason and maybe it has it’s purpose. I don’t know the future but maybe being so difficult to label is going to prove to be a good thing.

I don’t have answers but I do have hope.

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Wanting To Do More And The Pain That Comes With Being Unable To Do So

By on July 14, 2010 in Autism

One of the biggest reasons I get down, even to the point of hating myself, is that I only wish I could do more. I see these great parents writing amazing articles, running marathons, starting charities… I watched the movie Extraordinary Measures in which the father, facing the death of his two children, researches an under funded doctor who may have the cure and he sets out to confront that doctor, sets up a charity, gets the funding, finds the means and ultimately succeeds in getting a treatment found and now his children are still alive because of it.

Super hero stories are all around me where parents do super human things from sharing important information to raising millions… you’d think it would be inspiring.

The fact of the matter is that I’m just a guy… a dad, who works around the clock to simply be able to afford groceries as well as keep the power on. I’m just a guy who doesn’t have a university degree in business or journalism or science… I don’t even have a university degree!! I’m just a dad.

The truth is, no matter how much I can love my children, no matter how much I can sacrifice… I won’t be winning any awards, I won’t be changing the world any time soon.

Loving my children so much should be enough. I really do get it, I really do understand. I am doing what is needed. I have what I need. I am content with the life I have, I am content with the progress that Cameron has made.

But it’s not enough. Having what I need keeps me content. But I still wish for what I want… to really make a difference. To help find that treatment like the guy in the movie did. To find the doctor that has the real answer and help him if I can.

I get down on myself quite often, I just wish I could be more than what I am, have a better education, more skills, more time, more money, more fame to influence….  something, anything.

As it stands now, I get about 5 hours of interrupted sleep each night, and work when I’m not sleeping to afford the life we have. I just can’t do any more and it hurts.

I depend on others. I depend on them to find the answers that I can’t. I depend on them to make the changes that I can’t. I depend on them to be everything I wish I could be.

When Cameron is older, how do I look him in the eye and say “I took care of you, but I really didn’t do anything to help.” ?

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The Balance Between Work and Family Time

By on July 14, 2010 in Autism

Balancing family time with your work can be a challenge for just about any family but when you have special needs children and find yourself struggling to make it to the next pay check every single month… it becomes less of a challenge so much as a losing battle.

I am a web developer, which essentially means that I write code that makes a website work… not the design, but the functionality of it. As such, I do get the luxury of working from home but that doesn’t mean I get any extra time with my family. Quite the opposite really, for the most part. I tend to do my 9-5 like most everyone else does, and then I eat supper and end up with the same decision every single night… do I get in extra work in the evening so that we can afford groceries or do I spend time with the family after supper? I find myself having to sacrifice family time so that I can get extra work in so that I can make ends meet.

It gets especially painful when I buckle my kids into the van and my 2 year old says “Dad, you coming with us?” and I have to say “no, you guys are going swimming without me today… daddy has to work.”

Natalie (my wife) often gets upset that I’m not spending enough time with her and the boys, my 2 year old often gets upset when I leave… for example, Sunday mornings are supposed to be my day to sleep in, but he absolutely will not allow his mom to get up with him. It has to be me. And he’ll cry the entire time that I’m not up. We know that it’s because he doesn’t get enough time with me.

It’s really hard on them, it’s really hard on me. I have people asking me to do work for them all the time, and when I see a chance at extra income, I just have to take it… having to figure out how to stretch $20 for a week until the next paycheck gets pretty old pretty fast.

It’s great that there are charities out there funding research and setting up programs to help our children learn and grow… because there’s no way I could afford that stuff. I don’t think it should be up to them to help us out just so that I can spend more time not working, but at the same time, I really think that we (and by we, I mean all families with special needs children) could really use some extra help sometimes.

I really love my family time, I just wish I could get more of it.

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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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