Allergy Testing at Sick Kids Hospital, My Little Warrior

By on June 28, 2010 in General

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.

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

By on June 23, 2010 in 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: http://www.facebook.com/autismfather
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:
http://twitter.com/autismfather/autism-parents – A list of people who have at least one Autistic child. These people know and understand what you are going through.
http://twitter.com/autismfather/autism-resources – A list of resources where you can get the latest news, research, events, charities and more stories.
http://twitter.com/autismfather/amazing – 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.

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

By on June 22, 2010 in Autism

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.

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The Younger Sibling, Autism’s Worst Nightmare

By on June 21, 2010 in Autism

I’ve talked to people who tell me that they wish their ‘normal’ child would have more understanding when it comes to their Autistic sibling… my answer to that is… if they didn’t get on each other’s nerves, they wouldn’t be brother or sister. It’s like a law.

But I do understand what they mean, I live it every day… in my case, there can’t be any understanding because Cameron’s younger brother is only 2… yes, the terrible twos!!

Right now we have 2 issues on our hands when it comes to brotherly love…  one is Cameron’s personal space when he’s overwhelmed and the other is Cameron’s return home from school.

Cameron’s personal space is important to him, as it is for most people but more so for someone with Autism. Cameron will literally separate himself from people and play on his own, quietly, in an empty room for a good 15-30 minutes until the feeling of anxiety goes away and he’ll rejoin the people. He does this entirely on his own, when he needs it. However, tell this to a 2 year old and you might as well talk to a wall. His little brother Tyler will follow him and continue to push and push and push. We bought a little tent, not so much for camping but for just playing in and Cameron likes to hide himself away in it.. he even flips it forward so that the entrance to the tent is on the floor. This means there’s no way in or out.

Well, his little brother doesn’t like that at all because now he’s being excluded from something fun and he freaks out… fighting ensues.

The second primary reason for issues is when Cameron returns home from school. You see, at 2 years old, poor Tyler essentially stays home on his own most of the time to play games and do things with his mother. Sometimes he has friends over, or goes places, but a lot of times he’s on his own. And so when his big brother Cameron comes home from school at 3pm, he latches on for fun and games.

The problem with this is that Cameron is returning home from an already overwhelming day of learning and socializing. He returns home and would love nothing more than to grab a couple of familiar toys and play quietly, calming himself down but his little brother immediately glues himself to his side and tries to play with him.

Cameron typically responds by telling him he’s a bad baby, that he’s going to have a time out… you know, anything and everything that we’ve ever said in his life to tell him that he’s done something wrong. This causes Tyler to react by screaming and it escalates from there.

The best we can do in these cases is explain to them, each and every single time, why they’re behaving the way they are and what they should be doing to be nice to each other. At first it’s like talking klingon to a bunny rabbit… but over time they let it sink in a little.

In our case, Cameron is willing to give a little and play with his baby brother for a few minutes to make him happy before he finally has enough and leaves.

There’s only one thing I can tell you that makes any sense about it all…  some day, some how, they will look back on these times with fondness… although it may be 40 years from now. But in the end, Autism or not, the fights and bickering is pretty much to be expected. They’re siblings.

Just remember to put your ‘extra patience’ hat on and do your best to either let them settle it or solve it for them… just as any parent would.

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People Need to Realize that Autism Is Not Less, It’s More

By on June 18, 2010 in Autism

I think that something that is lost in the translation to people who do not deal with Autism, is that yes, Autistic people have less communication skills, less social skills, less ability to understand non-literal speech and on and on…. but that does not mean that there is less to the person. In fact, it could be argued that there is so much more!

What most people fail to realize is that a person with Autism does not miss details, they get it all. All the sights, sounds, smells.. everything. When you walk into a grocery store, your mind filters out the white noise… the buzzing, humming, mumbling, background music, stuff being moved around, people walking, doors opening and closing… on and on. An Autistic person can’t. And that’s just sound.  Next you take the harsh lighting, things moving everywhere, glints of light off things, flashing lights, labels on everything, colours everywhere, people constantly doing something with something… there’s a lot to see. We say excuse me to the person in front of us and look for items on our list or that’s on sale. And Autistic person can’t do that.
And then there’s the smells… I’ll spare you the gory details on that one.

Now, on top of the sensory issues, you also have to take in the fact that the computers in their heads are working a mile a minute as they process every conversation, work out the math on all the numbers in the place, study the geometry of the fruit… all of this is happening faster than any science fiction computer you’ve ever seen.

What happens is, and is to be expected, a mental break down where even the best and brightest on the planet would agree that it’s simply too much to bare. We’ve all heard of that fun little torture technique where you poke someone in the forehead long enough it drives them crazy, or there’s a high pitched sound you can’t get out of your head?  That’s one… one thing that happens for a matter of minutes… and it drives you crazy. Now imagine a thousand things… for an hour… for a day… forever??

If you are not touched by Autism, then it’s hard to understand… even harder still to understand why we parents and friends are so vocal and fight so hard for our loved ones… and why we hate you oh so ever much more than you hate us while you stare at us because our child screams in line at the cashier.

And if you are touched by Autism, your child, relative, friend… always try to remember that if it seems like they’re behaving irrationally, there’s likely a very good reason for it. Have more patience than you thought you could as you take a deep breath, slow things down a bit and have a look and listen around. You may find that they’re dealing with a lot more than you ever thought someone should have to.

It’s not their fault… it does not make them less… it makes them different.

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