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Something That Upsets Me: When One Autism Parent Tells Another Autism Parent “How It Is”

By on July 3, 2010 in Autism

Now don’t get me wrong here, I’m not talking about people offering support or advice, I mean the ones who outright tell you that you have to put your child on a diet, they tell you that vaccines are what caused your child’s Autism, they tell you that you have to do what they’re doing and they tell you that they are right….  which obviously implies that… you are wrong.

Now, I have my opinions on some things such as the vaccine debate, but I never force that on anyone. I have my opinions on the diet, as the gluten free portion really helps my son but none of the rest of the diets do. We all have opinions! There’s nothing wrong with that.

But please stop trying to tell me or anyone else what you ‘know’ (when what you mean is ‘think’) is true.

First of all, there is no definitive answer to the vaccine debate, no matter how certain you are, the diet does help some, but not all and every single therapy and drug out there that helps one child also does not help another.

Autism is a trial of hit or miss, a life time of “try everything” where you quickly become a researcher, doctor and psychologist all in one despite the fact that all of your degrees are found through hear-say from other parents, the doctors at your family clinic and Google.

Most recently, which is what set this post off, a woman replied to another parent’s question on what to do, with one word: “DIET” and went on about it and included how [she believed] her children were harmed by antibiotics or vaccines, including a little disclaimer: “Pretty sure everyone else’s avenue there is similar (vaccines OR antibiotics).”

This really quite upset me, and I was so tempted to lash out in response but instead, I did reply but simply stated that no.. not everyone is similar.

The fact is, not every parent believes that their child was harmed due to antibiotics nor vaccines. So please, do not speak on my behalf.

While I sat there, tempted to hit the submit button with all my anger and frustrations typed out in a rather emotionally charged response, I thought about why it angered me.

I think that I just come to expect more from people dealing with Autism. It’s true! Think about it, Autism is a spectrum disorder, that means that no two cases are identical. It also means that symptoms, causes and treatments can be and mostly likely are different for most Autistics.

It’s the one thing that all scientists, doctors and hopefully even parents can agree on… my child with Autism is simply not the same as your child with Autism.

So I just sort of expect that other parents would simply speak to each accordingly… that they’d share THEIR experiences and what works with them but never presume to tell anyone it’s what they have to do… that they’d share what THEY think caused it but never presume to tell someone else that it’s their problem too.

It angers me, it really does. I write this blog to share my experiences with my son so that hopefully you see something that inspires you or makes you think “hey, maybe we could try that!” Maybe it’ll help you and your child, maybe not. But I’d never write something saying that you must do what I did or think what I think.

I’m sorry that this isn’t your typical, feel good, type of post from me but I feel I had to let it out, otherwise there would be twitter and/or facebook replies that would start a whole mess of arguments that really didn’t pertain to the situation or help in any way.

So feel free to reply to me here, if you disagree or wish to share. That way we can keep valid questions/support free of needless digression.

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Sometimes I Think That Autistics Have It Right

By on July 1, 2010 in Autism

When you boil down “Autism” to it’s core, by most definitions, it’s a lack of ability to communicate and socialize, usually derived by an inability to understand or “get” people. People with Autism have a hard time figuring out what it is that people mean by the things they say, they have a hard time knowing when a person wants to speak up or just listen or what their tone means.

For the most part, we as a society think they’re the ones with the problem, they can’t figure out what we do… but when I think about society and all the greed, two faced, double talking, innuendo, plays on words and so on and so forth, maybe they’re confused for a very good reason.

When I stop and think about it, when I really sit down and think about what people around me are saying, very little of it makes any real sense. If my brain wasn’t working over time to understand the context, the slang, the double meanings and the hidden messages… it would all seem very bizarre to me.

We, as a people, have messed up our languages in so many ways, over using sarcasm and irony to a fault, throwing in double meanings into everything to sound witty or smart….  actually, when I think about it, perhaps all men have a touch of Autism because let’s face it, not one of us understands the ‘hints’ and ‘signs’ from women.

It gets worse… I have approximately 20 teenagers in my facebook friends list including family, babysitters and so forth and not one of them can spell very well, not one of them understands grammar at all and not one of them cares. Those teenagers will grow up to be adults that will speak very differently from how I speak. Do you think what they speak will be easier or more difficult for an Autistic person to understand?

What I’m trying to say is, maybe it’s not those with Autism that have the problem. Maybe it’s us. We’ve perverted our language so much that half of the time, we don’t even understand what it is we’re trying to say anymore. If the internet is any indication, we’re losing our basic skills and replacing them with faster, more convenient, lack of skills! How many times have you seen someone use ‘loose’ instead of ‘lose’? Or ‘there’ instead of ‘their’? There’s a million examples and it’s only getting worse.

If you know someone with Autism and they have a hard time understanding you, maybe it’s not them… maybe it’s you. Slow down, think clearly about the message you’re conveying. Chances are, if you think about it, it’s not the message you actually are telling.

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Family Dinner is Not What I Thought It Would Be

By on June 30, 2010 in Autism

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.

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Money Problems – Research or Treatments?

By on June 29, 2010 in Autism

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?

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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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