Archive | June, 2010

Family Dinner is Not What I Thought It Would Be

When you have a baby, and you’re standing there with this little new life of just a few minutes… your life flashes before your eyes, only it’s not the life you’ve had but the life you have yet to have.

You picture teaching this new life how to walk, how to say it’s first word, how to throw a ball, ride a bike… eventually, how to drive. So much floods your mind that you literally get light headed thinking about it. And as the years start rolling and you start doing some of those things, your mind starts to picture the more simple things as well, such as bed time stories, visits to the park, school and family dinners where everyone talks to each other.

But then you find out that your child has Autism (or any disorder/disease really) and all of those happy thoughts of your life yet to be come flooding through you once again, only this time it’s not of how you look forward to them… but… will they happen at all?

We bought my son a bike, and I made a solid attempt at teaching him to ride it but he could never get his feet to do what was needed of them. And if you’ve ever seen a 4 year old with Autism try to run, you would see why. So I’ve put it off for another year, we can try again as he learns more control.

I tried to teach him how to catch a ball but again,  his hands simply don’t have the discipline and coordination to do the things that are required of them.

Family dinner is one area that has been particularly difficult… and it’s not because he won’t talk to us, as you might expect from a child with Autism.

While it’s true that Cameron has a hard time with the social aspect, it’s not that he can’t talk to us… he does, it’s just that he can’t sit there for a whole meal. Essentially what happens is that myself, my wife and my 2 year old all sit around and eat while Cameron runs in and takes a bite and then runs back out to the play room to play. We give him a bit and then call him back to have another bite and he disappears again.

This has been the routine ever since he’s been able to do so… it means having a dinner with and without the whole family. It’s not what I had pictured at all, but I’ll take what I can get.

The other issue is that he’s on a GFCF diet, which means that 9 times out of 10, he’s eating a specially prepared meal that doesn’t match ours… we do try to stick to the same diet however my son’s food issues extend beyond just what we limit him on. He also refuses to eat the majority of vegetables and all meats, including fish and chicken. He has never once tried fast food and refuses to, but he does love candy and chocolate, not the best supper options.

So there we sit, watching my son run in and out through the entire meal, eating something different from the rest of us. Not at all what I had pictured when I first held him in my arms, not at all the happy family setting you see in movies and television.

We often get funny looks or comments from friends and family when they see us let him run around and play, rather than sit up like a good big boy and eat until his plate is empty (right? you all remember your parents making you do that?)… well, the fact is, either we do it this way or he doesn’t eat his dinner.

I’d much rather have a child with a severely limited diet actually eat, even if it means he plays all the while, than to have him not eat at all.

It’s not what I pictured, it’s not what you see on tv and it’s not how people tell you it should be… but it’s my family, he’s my son and he’s happy and healthy so to me, it’s the perfect family dinner.

Comments { 1 }

Money Problems – Research or Treatments?

It seems that money is more limited for Autism than it is for other things such as Cancer and Aids, and rightly so really, since they cause death and Autism does not… but limited money means having to make hard choices.

Autism Speaks came under fire when their *then chairman suggested that they stop funding repeated research into vaccines over and over again and turn the money towards other areas of research.

That’s all well and good for finding a prevention in the future but I think most of us parents would agree that we’d love to see more money funnelled towards the programs and organizations that actually help us right now. My son was diagnosed at 2.5 years old and was immediately put on a waiting list…. a 3 year waiting list! That’s simply unacceptable as he’d be older than 5 before receiving his first bit of helpful therapy.

Furthermore, he’d be put into school before 5 and would be in a class with 28 other ‘normal’ children with a teacher that wouldn’t be able to help him, and no aids neither. I don’t have to be a psychic to know that this would be catastrophic to his development and to his future.

My wife and I had to take it upon ourselves to find better services elsewhere, to sell our house, to pick up and move as quickly as we could to ensure that he had the help he needed.

Now, admittedly, this gives me a rather narrow view of it and a pretty biased opinion of where the money really should be spent…. what benefits my son will always be my top priority but my logical side also tells me that research is paramount to ending this sort of thing happening to parents and their children in the future.

So my question to you is, where do you think the money should be spent if we have to choose one over the other?

Comments { 2 }

Allergy Testing at Sick Kids Hospital, My Little Warrior

So I wrote about how humbling it was to visit a place like Sick Kids Hospital, to see all the children truly suffering and even dying, but I didn’t feel it warranted writing about my own experience at the same time as it distracted from the message, so here it is now.

My wife, Cameron and I arrived at the hospital around 8:40am in anticipation of our 9:30am appointment and was immediately warmly greeted by nurses and given a lot of video games and toys to occupy our times with. First we headed off to the cafeteria for a warm bacon and egg breakfast since we had a little time.

We were called in right away to have Cameron weighed, measured and pressure taken… however, due to his diet rendering him so skinny and his squirmy behaviour, they never did get his blood pressure. Their digital devices simply couldn’t get an accurate reading but he did great with standing on the scale and against the wall.

After a short period we found ourselves in the little doctor’s room where they put 4 drops on his arm and then punctured the skin a bit… at this point, I think Cameron had more of an issue with his arm being held and something being done to him that he didn’t understand than he did with any actual pain. He complained quite vocally but then calmed down just as quickly once it was over.

We had to wait a short while for any reaction, none came. So back came the doctor and this time, with needles. The doctor even told me that they were really quite painful… not at all like when you simply have blood drawn.

This time, Cameron let out some screams that likely scared the bejeebies out of any other children still in the waiting room. However, that being said, he never once tried to pull his arm away… never once tried to get away at all. Despite the overwhelming pain and his arm being held against his will and his obvious distress… he did what was asked of him. Cameron sat on his mother’s lap who held him, comforted him and most of all, was the one to keep his arm where the doctor could do his work… if they hadn’t allowed her to be the one to hold him, it could have gone a lot worse. He demonstrated a truly a brave character trait that I can be quite proud of… but not only me…

The doctor was apparently impressed with him as well because he left for a bit and then came back with a brand new book that he got to keep. It was a cute little animal puzzle book which Cameron loved quite a bit… and immediately got to work on. However, when my wife asked him “Do you want to take this book home or leave it here for other boys and girls to play with while they wait?” he quickly replied that he wanted to leave it for other boys and girls. Again, another great character trait.

The doctor checked his arm out and found no allergic reaction so we were onto the 3rd and final test, the actual medicine portion… he had to take a dose of penicillin and see what happens. Again, he wasn’t happy but he did as told.

The doctor heard how Cameron liked the book but wanted the other children to enjoy it and so he returned again shortly later and this time with a dvd! He gave my son the “Arthur and the Invisibles” DVD, still wrapped in plastic… for being such a great patient.

We finally got to leave after 1pm, we finally found out once and for all that he wasn’t allergic to penicillin (although now we have no idea why he broke out in hives when he took it when he was younger) and we were heading back to the hotel with a new movie for him to watch.

It sure did make for a long day but Cameron handled all the waiting, all the pain, all the discomfort and all the overwhelming issues that must have come from having Autism and being stuck in a place like a hospital… and he handled it very well.

For how well it all went, I sure do hope that we don’t have to do it again any time soon.

Comments { 0 }

Social Media Could Not Have Come at a Better Time, Let’s Use it For Autism!

It’s sadly ironic that a disorder affecting 1 in 110 children (by current estimates) can leave you feeling so alone. How can a world of almost 7 billion people have around 63,000,000 Autistic people in it and still leave us feeling like we have no one to talk to and no one who will understand what we’re going through? Mathematically, it seems ridiculous.

But the truth of the matter is that we do feel alone, we do feel isolated and we do feel like no matter how hard we try, we just can’t get people to understand what it’s like. More so than that, we feel lost as there are far too few programs, organizations and professionals for us to talk to.

Luckily, for many of us, we have already had a fair amount of experience with the internet and have grown accustomed to seeking out information for ourselves, some are even adept at researching for more information, or keeping themselves up to date on current trends. But it’s only been in the last 3 or 4 years really that our greatest tool has been brought to us, social websites!

Now, more than ever, we can connect and share stories and information with each other one on one or in groups. Facebook and Twitter are my personal favorites and I have received an overwhelming amount of support from the wonderful people I’ve found there.

I highly recommend using these and many other social sites as tools in your quest to add more information to your arsenal, and even to help gain that extra support, motivation and inspiration you may need to get you through some of the tougher days.

I do have a couple words of warning however, from my own personal experiences.

  1. Beware the temptation to win the popular race. This is especially tempting on Twitter where you see that # next to your Followers indicator and you just want it to go up and up and up. The truth is, you’re seeking knowledge and information that is extremely important to you. What you need is a community of followers and those you follow that will give and take from you the strength and information that will keep you all going. It’s not a popularity contest, as many on these sites will have you believe.
  2. Don’t let anyone “TELL” you what to think. It’s very easy to see a Facebook fanpage with hundreds of thousands of fans, or a Twitter account with hundreds of thousands of followers and think that they must know what they’re talking about, so what they say is obviously right. I think, in most cases, they would never do that and would only do their best to advise or share information and let you make your own decisions. But there are some out there who try to make up your mind for you, and try to ‘convince’ you to think the things they think. Remember, no matter the ‘popularity’, these are just real people out there like you and I, and they have no right to tell us what to think.

Don’t tell yourself you’re a nobody and shouldn’t contribute, because all of the people in the community are created equal. Perhaps they have done more research than you have, perhaps not… but they’re real people. And as a community, I’ve never once felt like I wasn’t appreciated for giving my two cents. It’s been a truly remarkable experience actually, intimidating at first but as I started to receive welcomes, feedback, support… I found that these places aren’t so bad.

I always pictured them as prank places for kids, you know… where teenagers go and talk about the latest pop stars and share dumb jokes but in all reality, there are some very very intelligent people, extremely supportive people and an absolutely amazing community that you can be a part of.

I really do hope you take the plunge, it’s so worth it.. and when you do, visit my fan page:
Be sure to scroll down on the left hand side and view the “Favourite Pages” section to find some truly wonderful fan pages full of information, people and stories.

Also, visit my twitter lists as they are filled with people just like you who would love to hear about your experiences, and may have advice or may even learn some things from your story themselves: – A list of people who have at least one Autistic child. These people know and understand what you are going through. – A list of resources where you can get the latest news, research, events, charities and more stories. – This list is called ‘amazing’ because that’s the only way to describe the people on it… they have Autism, and they share their experiences on Twitter.

1 in 110 is staggering… you are most certainly not alone, not any more. Join us and become an active part of the community. Every person that does makes it stronger.

Comments { 0 }

Wow, Maybe I Don’t Really Have It So Bad After All

I find this quite difficult to write, partially because it’s fresh in my mind and partially because I don’t want to even pretend to downplay the difficulty and frustration in dealing with Autism. It’s such a difficult disorder to have and to have close to you that I literally can’t find the words to explain it as well as I would like for you to understand it.

The thing is that today I had to spend half a day at Sick Kids Hospital where my son, Cameron, had to undergo some allergy testing, specifically for penicillin. The thing about a place like Sick Kids is that you meet so many wonderful people, everyone is open and caring and there’s so just so many smiles and cute little faces. They really go out of their way to welcome you in to a place that, in all honesty, they wish you never had to visit.

You see, you visit a place like that and you see all those adorable smiling faces and talk to so many people and you quickly realize that…  us Autism parents, we really don’t have it so bad.

You don’t have to be there for very long before you see a bald child with very dark circles around their eyes, or a child with no legs wheeling around in a wheelchair, or parents sitting arm in arm, consoling each other as they cry so hard that they can’t even talk. These places truly work magic as you feel happy, welcome and close to everyone all the while you have tragedy all around you.

I don’t know the stories of these people in particular, I just know that I saw them today and I feel great sorrow for them despite not knowing… I know that, no matter how bad it’s been for me, I still couldn’t imagine what it must be like for them.

Then you hear the stories about these places, the stories where parents happily give birth to a new bundle of life only to discover that it already has cancer, and that it likely won’t survive. Still, they are determined so they go to a place like Sick Kids where the child moves in, where the parents move in… where against all odds, the child out lasts the predictions, the child grows and thrives. But after years of beating the odds, they finally succumb and ultimately leave the parents without a house, without a job, without savings and without the child that they’ve fought so hard for.

There are literally hundreds of stories like that and each and every single one is as tragic as the last and I look at my son sitting next to me, playing the Mario game that this amazing place has provided to put a smile on the faces of every child that goes in there and I think… is it really so bad?

You see these nurses and doctors with a smile on their face, every single one of them… they all greet you pleasantly, they all are genuinely happy to see you and your child and you know, you just know that yesterday, they day before, the week before…. some time, not so long ago, they’ve watched an innocent and very loving little child die. They’ve done what I simply can not imagine having to do even once, and they’ve done it as often as I’ve updated my blog, more even! And they will continue to do it because as hard as it is, it’s worth it to see the children that don’t die. The children that beat the odds, the children that can simply smile back, the children that can go home and just be healthy.

I don’t want you to think that I’m downplaying the seriousness of Autism, or any other disorder, disease or anything else for that matter. But when you see, when you really see just how tragic it really can be for some people, for some parents and some children, I can’t help but think… maybe I don’t really have it so bad after all.

Comments { 1 }