Tag Archives | parents

Parents Magazine completely forgot about Autism Awareness Month… and then…

By on March 24, 2011 in Autism

While checking around the various social networks and news sites, I came across this About.com news story: “Parents Magazine Ignores Autism Awareness Month“. The good news is that this is likely not going to be a mistake that they repeat next year because they got an ear full!

Autism advocates quickly “liked” their Facebook Fan Page, not with the intention of liking them, but being able to voice their disapproval (I think disgust is a better word but I’m trying to be nice).

The awesome folks at Try Defying Gravity have been covering this expertly and really helped with the push towards getting this resolved and resolved, it is… well, sort of.

Here is the statement, in the discussion group page of Parents Magazine Facebook Fan Page:

We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email FacebookSupport@meredith.com with the following information:

• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)

We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.

They screwed up, they know it. But does a discussion page post tucked away somewhere in the middle of page 2 really make it all better?

I think they could do better.

But instead of waiting on them to do better, let’s follow in Try Defying Gravity‘s example and do better for ourselves.

Update your blogs about this, share this on Twitter and on Facebook and let’s get their hidden message out and give them so much to write about that they’ll need a double thick issue, or better yet, need to devote the next 2 months to Autism.

Keep in mind, I am passionate about this because their response ties in perfectly to what I’ve been trying to do, and that is to get people to share their stories on April 2nd. The Awareness is Not Enough campaign is going strong and this is the perfect opportunity to get your story out there to the world.

If you’ve been wondering how you can best share your story, this may well be it. So email them. Their email address is in their statement above. Let’s make sure this is a mistake that they never ever make again.

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He’s my son

By on November 29, 2010 in Autism

One of my two year old twins, Logan, has autism, SPD, very significant food allergies, and seizures. The twin brother, Colton, does not. It has been interesting to me, in the nine months since Logan’s diagnosis, the various things people have said in response to that. A neighbor come into my home once and told me, “Oh, what a shame that Logan is that way. But what a comfort it must be that you were able to have one twin that’s not got problems. At least you have Colton and the other kids.” At the time, I was so angry, I invited this neighbor to leave and never come back. But that incident provoked a whole thought process in my brain which turned out to be a good thing!

Yes, Logan has autism. Logan has sensory issues. Logan has food allergies that are so significant that they can ( and have) cause anaphylactic shock. He is the only two year old I know that has a twinject prescription that has unlimited refills. But even with all that, more importantly, he is my son.

I do not love Logan any less than I love Colton or my five other children simply because he has autism and other issues. I do not love Colton more because he does NOT have learning delays, or allergies. While I do have to do things differently for Logan because of his special needs, it does not change the fact that he’s my son.

When I write about Logan on our blog, or introduce him to someone, I do not say, “ This is Logan, he has autism.”. I say, “This is my son, Logan.” You see, that thought process which my neighbor provoked, inspired me to search within myself and come to some carved in stone realizations.

Autism does not define my son. Autism is not the sum of his existence. What autism has done for our family, however, is taught us to sit back and enjoy the little things. Milestones that my other children hurdled as a matter of course, are now something we celebrate. Not because Logan has autism, but because Logan has mastered something new after days, weeks, sometimes months of practice and struggle, without every giving up. We have learned that a victory is a victory, no matter where you are in life.
Logan is not “that way”. Logan is Logan, and that’s all he will ever be. Just as I am me, and you are you. It’s as simple as that. Yes, Logan has therapy to help him. So what? I have spell check to help me, because I have fingers that like to type before I finish a thought. Both therapy and spell check are tools. Everyone has different ones, for different reasons, and it makes you no less of a person, by using them.
Loving your child is all encompassing. Whether the child walks or talks or grows up to be President of the United States, he/she will ALWAYS be your child, and you will always be your child’s parent.

Now, when someone “consoles” me because I have Logan, I simply say, “Why are you consoling me? Logan is a gift. He’s my son.”

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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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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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Educating The Educators

By on May 26, 2010 in Autism

The title sounds a bit harsh, I don’t mean to undermine the experts, doctors or teachers… but I do want to emphasize one thing rather clearly, you know your child better than they do. They know generalities, sciences and the history more than you do but they don’t know your child. This means that in some cases, you do know better and in some cases, you need to explain some things.

I would like to give an example and I hope I don’t offend anyone, they did nothing wrong, it’s just that this was a situation where we, as the parents, had to step in and explain how our child was unique.

We are very fortunate to have found an extremely wonderful school for our son, where the entire bottom floor is dedicated to Autistic children. This means that different rules apply there, such as peanuts… they’re allowed on that floor, since many children have special diets and in some cases, some nuts are actually therapeutic.  We sold our house at a moment’s notice, moved over 8 hours away and had some rough times but we were determined to make sure that our son was in this school and it turned out to be a great decision.

At the age of 4, Cameron had his first full year in school where he had one teacher, 4 teacher’s aids and all the other children were also Autistic. The number of students varied through out the year but generally it was around 7 or 8. So imagine, 4 aids to 8 children plus a teacher as well. This was perfect for our son.

Prior to his schooling, we had worked very hard with Cameron to develop his speaking and education at home… when he visited his first class room, he could already count to 40 and recite his alphabet just fine. Not astounding but for an Autistic child who hadn’t said his first word by 2.5 years old, we were happy with his progress.

The problem came when his teacher and instructors were also impressed with his progress… in fact, too impressed.

For the first few months, a gradual change grew in Cameron as he’d become more and more disobedient, more prone to screaming, more violent… it just got worse and worse and we feared that he wasn’t settling into school, he was becoming less content with it.

We had been trying to talk to Cameron about what was bothering him, what was wrong but getting any child to volunteer information is rough, especially an Autistic child. Basically what it amounted to was us guessing at every possible situation and scenario we could possibly imagine until we hit it… and after several months, we did. His trigger word was “safe”.

What it boiled down to was his sense of feeling safe… once we hit the trigger word, he opened up and told us that “they don’t keep me safe” which meant, they didn’t make him feel safe.

My wife and I visited briefly one morning with his teacher who was completely understanding about it but it wasn’t until I had, in just a few minutes time, a chance to observe what was happening.

As we stood there, Cameron took one of those wooden animal puzzle boards and began placing the pieces as another little boy walked over, dumped it all out, walked to another child, knocked over their blocks, walked to another child…. and basically just disrupted everything.

No one had noticed this except for me, and no one would have ever known because Cameron just picked it back up and started over.

But what was happening was that he felt violated, unsafe… and would come home where the emotions would boil to the surface.

We discovered that, because Cameron seemingly took everything in stride and never complained about these things, the teachers and aids would either not notice, or remove the disruptive child from the situation… leaving Cameron there to be by himself, feeling quite alone, quite unsafe.

We never would have ever known without having been there for those few minutes to talk to his teacher but it all became quite clear.

After talking to them about it, they admitted that he seemed “too high functioning” to be thought of as having any problems like that. That he was so well behaved that they never imagined that he was having those feelings. And how could they? He didn’t demonstrate any problems until he got home.

Following that moment, we saw another huge change in Cameron… he settled back down, he became the happy and content child we had known previously. He felt safe again.  His teachers began to pay him more attention in those situations, to remove him from the scene (from the danger) and to make sure to always keep telling him how they’ll keep him safe.

We’ve had no problem since and the year is almost over.

Again, we’re very lucky to have found such a wonderful school for him, and we’re lucky to have such great people with him that will take our input, to not be offended that we step in like that, that do their very best in what must be an extremely difficult situation.

Personally, I couldn’t imagine what it must take to be facing many Autistic children every day, of varying levels of severity and to not only manage, to not only take care of them all but to teach them daily. It’s a huge task and one I am sure I could never do.

But despite all that, they still need the parent’s help sometimes.  They know it, I know it. It’s important that every parent knows it. Handing off your child and thinking that you finally get a break is not an option if you want what’s best for your child.

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