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Autism blogging – pro tips from an amateur

By on September 21, 2011 in Autism

I thought I’d change things up a bit with this post, rather than writing about Autism itself, I’d answer a rhetorical question I get a lot. Yes, I know rhetorical questions aren’t really meant to be answered. But in this case, I think it makes for a good blog post.

What is so different about your blog?

blogThe honest truth is that I’m really not that great at writing, as some people continue to try to convince me. It’s just that I always try to keep some key things in mind as I write, which has come to serve me rather well.

Here are some basic rules that I try to follow:

Never assume the reader knows me or my children

I treat every single post as if it’s the first post that the reader has ever read of mine. I do have a lot of subscribers and other returning readers but I also have to keep in mind that every single day (hopefully), there will be new readers too. That means that this blog post right here is being read by someone that hasn’t read a single word from me before today. Maybe it’s you! Welcome.

I sometimes allude to a bit of my back story and will often put in links to previous blog posts that covers that back story more in depth. That way, if someone already knows it, they can skip it and if they don’t know, they can either go and read it for more info or they can just skip it, being satisfied with the small bit I shared.

It also means that not every single reader knows my boys… so I always make sure to add in a little about them each time I mention them. For example, Cameron (6yrs old, has Autism) and Tyler (3yrs old, without Autism).

This way, a very short and little burst of info and presto, people now have what they need to know as they continue reading from there… whether it just be the rest of this post or any new posts they may read of mine from here on out.

“Never” and “Always” are two words you should always remember to never say

It’s a funny sentence but in this case, an accurate one. In the world, especially the world of Autism, there is no “never” or “always.”

No thought, feeling, experience, belief or anything else is 100% consistent for all people that will read what you write. This is especially true when you hit hot button topics such as person first language or vaccines.

But it’s also true on even the most trivial and mundane of topics as well. You could write about something cute your child said or did and the moment you try to suggest that everyone would feel something, or no one would think a certain way…. you’ll find yourself being corrected.

It’s much easier to simply assume that absolutely nothing… and I mean nothing… is going to be a mold that everyone fits into. No treatments, no symptoms, no experiences, no thoughts… nothing.

Be careful to use “some” or even “most”… and when you do, add in “in my opinion” or “in my experience”… because, if you were to be honest, that is the truth. When you make assumptions for others, you do it based on what you know, in your life. So maybe, in your experience, most people would do or say something, but that doesn’t make it true of all people… right?

Also, keep in mind that people with Autism, especially children, are not all Aspergers or HFA (high functioning autism)… and likewise, don’t assume that all parents have children that are non verbal, unable to toilet train or other “more severe” effects. It’s easy to get caught up in our “own little world” but as we right, we have to ensure that other parents can either still relate to what we right or to understand what position it is that we’re writing from.

You’re not writing a book

This encompasses a bunch of tips… first of all, keep in mind that if you’re primary target audience consists of Autism parents, as mine does, chances are they don’t have a ton of time to devote to a blog post. In fact, yours is probably just one of several that they’ll be visiting today. So keep it to a reasonable length unless you’re writing something really really important.

You might not think you need chapters, since it’s not the size of a book, but that doesn’t mean that you shouldn’t section it out. Take this post as an example… I could have put all of these tips into bullet points and then plowed out a big wall of text to go over them, but sections just makes far more sense. A reader likely doesn’t have all the time in the world and will have to skim your posts quite a bit, so you might as well make the job easier for them.

Even if you don’t feel the need for sections, you should still keep in mind that as a blogger, you do have other tools at your disposal. Such as making important points bold and using italics sometimes as well never hurts. Most of all, if you do find yourself staring down a big wall of text, maybe you should try splitting up your paragraphs a bit more.

I like to split up thoughts into different paragraphs, even if they’re just sentences. If I read it out loud later and find that I take a breath and start a new train of thought, I break up the line so that visually, the reader will be able to do it naturally.

Other general blogging tips

Aside from the things I’ve mentioned, I also follow other general blogging tips that you will likely find on just about any blog about blogging… regular updates, lots of proof reading, writing about what I know… all that juicy goodness.

There’s 2 other things that I do that have been invaluable…

1. I tend to get ideas from other people, whether it be conversations, other blog posts, comments or just about anything… one idea I had was from an off topic remark on a home and garden show! When that happens, I quickly go to my blog and start a new post with the general idea of the post and save it to a draft. Having the WordPress mobile app on your phone or iPad is especially handy for this.

Chances are I don’t have time to write it just then and there… so a draft comes in really handy. This is especially handy when I find myself without ideas later… when my blog is needing a post, due to lack of updates, and my mind isn’t coming up with ideas, I can hit my drafts and find some good topics that I never got a chance to return too.

2. Sometimes as I write, I find that my blog post just isn’t turning out how I’d like or I’m simply not happy with how I’m wording things and know that it won’t be as well received as it should be.

When this happens, I hit the “Save Draft” button and call it a night. Not only have I found no harm in sleeping on it.. but most of the time, almost every time in fact, I find it hugely beneficial. When I return to it later and read it back to myself, it comes to me so much easier.

It may mean putting off a blog post a day, or maybe even a while if you just don’t get back to it for a bit… but that’s ok. It’s always there and it’s always usable.

For what it’s worth

Now, all of this I share knowing full well that it’s a take it or leave it post… I am not an expert, I have not been doing this for decades or anything. I don’t even have all that many readers, in comparison to many other blogs.

These are simply the methods that I use. They’ve served me well in the past.

If you have any more thoughts or tips that you use, please feel free to share in the comments. I’m always eager to learn and improve!

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Who has a right to talk about Autism?

By on September 17, 2011 in Autism

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

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Handheld devices and the benefits to children with autism

By on September 14, 2011 in Autism

I mentioned on Twitter the other day that my son wants a Nintendo 3DS for Christmas and a few parents got into a discussion about how great the handheld devices were for children with Autism. Also, when I wrote about taking children with Autism out to restaurants, a lot of parents were quick to point out that they often brought along devices as well to help.

So what is it about handheld devices that are so great for children with Autism? What are the downsides?

It’s all about control

handheld devicesHaving something right in your hand gives you complete control over it. That means that if you pause a movie, take a wrong turn in a game, flip pages in a book too fast… no one will be upset, no one will say anything… it’s only for you and you are in control of it.

You don’t have to wait for anyone to do anything, you don’t have to ask for permission before making choices… it’s all yours.

Doing what you love

My son loves to read books and play video games, which means that I can put a book in his hand or a handheld video game system and he’ll keep himself amused for hours. It’s what he loves and it’s right there in his hand.

When we parents think about bringing something to the restaurant to amuse our children, we don’t grab things they hate.. we get what they love.

Sometimes that takes trial and error but most likely you’ll find something pretty quick, especially since they get to control it.

Blocking out the world

The best thing about having something in your hand, engaging your senses is that it allows you to block out other input around you, such as sights and sounds.

If you have Autism, this could be huge. No more restaurant noises bothering you… however, if you’re a parent trying to get your autistic child’s attention while they’re playing a handheld game.. you may find yourself getting frustrated pretty quick.

Putting the three together… you have something you love, complete control over it and you can immerse yourself into that handheld world, blocking out the rest.

These are very important to children in general, more so to those that have Autism. People with Autism focus intently on the things they love, to the point where they need to block out the rest of the world.

Educational

Everything your child absorbs when they can control it, love it and focus solely on it is learned on a scale far greater than any other method.

And it doesn’t have to be an educational program or math book to do it either. There are life lessons in movies, there are problem solving and motor skill building qualities to video games. Your child will gain a lot of valuable knowledge and skill simply by being so engaged by that device in their hands.

There are no distractions, they love it and get to enjoy it even more when they have full control over it. What they learn… they learn. It doesn’t just go in one ear and out the other.

If you do get them reading a book, or doing an educational program on the ipad or something along those lines… all the better!

The one big downside

There is one major problem that most everyone will run into, Autism or not… but a child with Autism will find it even more difficult… that is when it comes time to turn it off.

The more a person loves something, is in control of it and is completely immersed in it as if it’s your whole world… the harder it is to have it ripped away.

I don’t know anyone that had an easy time getting a game, or book, or movie, or ipad, etc away from their child when they’re fully immersed in it. It’s going to be a battle…. at first.

But you can look at it more as a way to practice for the real world because let’s face it… if they don’t learn how to let go now… there will come a time when they’ll have to do it at school, work or just generally in public and if they haven’t had that practice, it could be a huge problem.

It used to be the #1 cause of meltdowns for my son.. he’d do great all day, get a game for a reward and then blow up when it came time to turn it off. But as I said, it “used to be”. He’s so much better now because he’s learned, over time, that it’s ok to put it down. It’s ok to put it off for another time because soon enough, if he behaves, there will be another time.

We just had to endure the meltdowns for a while to get to this point.

Handheld devices such as books?

You may have noticed I referenced books in with the other electronics in my examples… for Cameron, he loves books. A lot of the time, we can get a book from the library or from a friend and he’s more than happy to sit down with that for an hour.

He can’t read much of it (only really small words) but that doesn’t stop him from enjoying it.

You don’t have to force feed your child movies or video games… anything they love will do. Sensory objects, art work, books, money… yeah, my son also loves to sort out coins and such.

That being said, there’s nothing wrong with movies, games or ipads… they’re all helping your child to learn too. You may wish to limit those things a bit more but still, there’s no harm in giving your child a good game or movie.

The escape, the interactions…. all of it is not only good, it’s important. Your child may have a meltdown when it’s time to turn it off but it’s still valuable coping skills they’re learning.

Don’t feel like you’re doing anything wrong by letting your child stare at something in their hands for an hour or two… it’s good for them. It’s a valuable growing tool.

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Guilt, grieving and other emotions when your child has Autism

By on September 13, 2011 in Autism

There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.

“Should be”….  such a funny concept in a world of differences.

In my experience

emotionsI can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.

I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.

I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.

It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.

As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.

For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).

No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).

“Should Be” does not mean right or wrong

What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.

There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.

It’s not right or wrong, it’s just different.

Fear of the unknown

For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.

Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.

Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.

If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them.  They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?

Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.

We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.

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Autism can’t stop my son from being a great big brother

By on September 9, 2011 in Autism

This year, my younger son Tyler (3yrs old) started JK… his first time in school. He’s so very excited for it because he’s watched his older brother, Cameron (6yrs old), go off to school for 2 years now.

And even though Tyler is still only 3, he’s more than ready. He can count pretty high, knows his alphabet, goes to the bathroom on his own and most of all… he’s just so crafty. He loves to paint and build things… school is so perfect for him.

Still though, even when it goes perfectly for the most willing of children, school can be overwhelming for the first little while.

Still bragging about this school

Cameron

Cameron - Big Brother

I’ve written many many times about how I picked up my family and moved over 850km away to get Cameron into this school because of their amazing Autism classes… this year, Cameron is back for his 3rd year (grade 1 this year!) and he gets the same teacher, the same teachers assistants and some of the same classmates.

A couple of children have gone off to IBI or to another classroom but his familiar friends are still there. Cameron is doing exceptionally well thanks to this.

There is another added benefit though, which I have not discussed, because we had not yet reached that point but this year is the year… his little brother gets to attend the same school!

It’s a normal, run of the mill public school but they have 4 special classrooms especially designed and equipped for children with Autism.

This means that while Cameron is in his class of 4 children (including him), with 1 teacher and 2 aides…. Tyler, his little brother, is across the hall!

Overcome Autism? No problem with the right motivation

Cameron has never had a huge problem with hugs or showing his feelings but then again, it’s not as natural for him as it would be for most other children either though.

Trying to get that out of him where he’s not quite as comfortable is even tougher… like say, at school.

But that doesn’t stop him when Tyler needs him!! Oh no.

Tyler knows that his big brother is across the hall and when the anxiety gets too much for him, he knows to ask his teacher… so his teacher takes his hand, walks him across the hall, Cameron stops what he is doing, gives his little brother a big hug and tells him that he’s ok… and Tyler goes right back to his class, feeling so much better.

This is huge!

Cameron told me that he remembers when he first went to school… for the first 6 months or so, he had a very hard time because he “didn’t feel safe.” I told him that sometimes, Tyler might feel that way too but mom and dad can’t be there to help him.

Cameron stepped up to the task in a huge way and is genuinely eager, excited and willing to help out his little brother. He wants be the big brother that Tyler needs.

Not a surprise to those that know him

Tyler

Tyler - Ready for his first day!

While I am excited about this, I’m not surprised.. and I’m sure those that know Cameron won’t be surprised by this either.

Still though, as a parent, I’m still so very proud. Also, if you’re a parent of a child with Autism, I’m sure you can understand that even though I’m not surprised, I’m still… well, I wasn’t going to believe it until I saw it.

Cameron amazes me every day, as does his little brother, but I still put no expectations on him before hand. He won’t disappoint me if he doesn’t do it, he won’t surprise me if he does do it… but it’s never necessary because sometimes, he just doesn’t do what some might expect of him.

And while it doesn’t surprise me, what does get me is that he’s so willing to stop what he’s doing… to break routine… to show affection right there in front of everyone… and to know and understand what his little brother is feeling.

In that moment, when his brother needs him most.. he is not autistic. There is no Autism. There are no teachers. There are no parents.

There is only Tyler. His little brother. And he loves him.

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