How do you feel about seclusion versus inclusion schools or programs?

Posted by Stuart Duncan | Posted in Autism | Posted on 03-09-2010

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There’s been some debate over whether or not a child with Autism is better off in a classroom with other Autistic children or if they’re better off in a classroom of NT (NeuroTypical) children… the obvious answer is, why not both?

I guess I am just spoiled (or my son is) in that his school will offer an hour or two of ‘integration’ time where my son gets to join a class of children his age where the ‘normal’ children are. He tends to sit quietly to himself, I could only imagine how difficult it would be when I think back to my childhood, but it is a good experience for him. Even if all he does is observe, it’s educational. If it didn’t benefit him, I could simply tell them to stop and they would. It’s great when a school listens to the parents!

The problem is that not everyone has a school that is that flexible. Most schools don’t even have a mix where you get that option. You’re either in with other Autistics or you’re not and that’s that. If that’s the case, you’re left having to choose.

My advice to you, as it is with every parent of every child in every situation, stop expecting someone else to do what you need them to do. If your child is in a classroom with only Autistic children, then take the time (make the time if you have to) and get your child out to a park or play centre as much as you possibly can and give them that hour or two ‘integration’ time yourself.

As parents, we stretch our time pretty thin but you know what? If you had an expert at time management step in and help you out, you’d find that you have a lot more time available to you than you think. And even if you don’t, make it! This is your child we’re talking about and no one anywhere ever will give your child everything they need no matter how much you want it.

I had to sell my house and lose just about everything to find this school for him. So no, I’m not spoiled. I deserve it, my son deserves it and we did what we had to do to get it. And when he gets home, we still go to visit family and friends, parks, the beach and other places he enjoys so he can play with more children.

If your child is secluded and you don’t like it? It’s your fault. If your child is included and you don’t like it? It’s your fault. If you can raise such a loud voice as to shake the foundations of the town in which you live because you’re so outraged that they’re not doing what your child needs… why can’t you put that energy into doing something about it yourself?

Your child is not second best and so you shouldn’t settle for second best. You and your child need those schools and programs but you know what? They’re not there to do everything for you.

Get involved in making the changes required and more importantly, get involved with your child. Make the time if there is none. Because in the end, years later, if things don’t turn out how you wanted, there will be no one to blame but yourself.

Do you Love Autism or Hate Autism?

Posted by Stuart Duncan | Posted in Autism | Posted on 23-08-2010

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I have talked to quite a few people with Autism (usually more specifically Aspergers) that really love having Autism and the benefits that come with it. Although, I’ve also talked to others who absolutely detest Autism in all shapes and forms. These are usually people that do not have Autism but do have a loved one with very severe Autism, more times than not, it’s their child.

I don’t want to generalize too much, it’s just an observation. However, love and hate are two pretty intense emotions and when focused on a single subject, this can usually lead to animosity or hostility.

The more I got to thinking about it, the more I started to get hostile myself, not at either group of people but at the need to push their love or hate onto each other.

It ultimately resulted in me tweeting this: “Autism is not your sword to wield as a weapon nor for you to fall on. Love it or hate it, don’t tell others how to feel.”

I feel it’s important to share our accomplishments and our disappointments, our pride and our sorrow… but it’s very hard for someone that hates everything to do with Autism to watch someone with Autism themselves go on and on about how much they love it and how wonderful it is. Conversely, it’s very hard for someone who is very proud of their Autism to go on speaking very harshly about how life destroying it is.

I would like to suggest that you either accept their stance as their circumstances are very different from yours or politely ignore/unfollow/unfriend/leave that person and continue on with what you’re doing and let them continue on with what they’re doing.

In a perfect world, we all support each other. But sometimes we just can’t… and that’s ok. But we really don’t need to replace support with fighting. Love it or hate it, we’re all on the same side, I think.

I invite you to share, but not fight…  do you love Autism or do you hate Autism?

Should You Really Try Every Autism Treatment Until You Find What Works?

Posted by Stuart Duncan | Posted in Autism | Posted on 20-08-2010

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I have pretty much always told people to just try stuff until they find what works, whether it’s a diet, a medication, a therapy, an oxygen tank or even DAN. Some are far more extreme than others, some are fairly simple to do at home… no matter how different they may be, some work and others don’t.

I’ve always told people that there is not a single treatment out there that works for 100% of people and so what works for almost everyone may not actually work for you. Then again, something that seems far fetched and doesn’t get results for many may just be the key treatment you’re looking for.

However, over the last few years of researching and learning about what all is actually out there, I’ve learned to change my tune a bit… my suggestion to ‘try everything’ comes with a very bold disclaimer now: “Use common sense!!!

Just because I say to try everything, that doesn’t mean that I want you try something that is not safe. You have to use your best judgment, which is to say, do your homework yourself.

Even if 10,000 moms (or dads in my case) out there all tell you that they swear by something, that doesn’t mean that it’s safe, much less that it works.

Lately, in the news, you may have read about the OSR#1 drug which was recently pulled off of shelves. The Autism News reported back in January about it, in an article called “OSR#1: Industrial chemical or autism treatment?

If that doesn’t raise alarm bells, I don’t know what will. There were never any certifications or approval labels given to this drug because quite simply, it was not safe. It was finally pulled off the shelves in July, 2010. Yet, thousands upon thousands of parents not only used it but endorsed it to other parents.

Another medication that many parents have tried, and again, endorsed, is Lupron. You may have heard of it, but probably not… a well known science blog wrote about it in an article called “Why not just castrate them? The Geiers’ “Lupron protocol” metastasizes”.

This drug effectively castrates your child, cutting off hormone production in an attempt to mellow them out… much like fixing a cat gets them to stop acting so wild.

Did all of those parents do their homework on these drugs before hand? Granted, hindsight is helpful… in that there likely wasn’t as much information in the beginning but still, if you did your homework as you should, you’d at least have seen the warning signs.

And no matter how much you trust or distrust your doctors, you should be asking about these things before putting them into yours or your children’s system.

There’s a lot at work when it comes for wanting the best for our children… our own passion, our mission, our cause, community endorsement, community support, people with “doctor” before their name that simply wish to make money…. in the end, we absolutely and unquestionably can not ever let these things make us sacrifice our own common sense.

I want to ensure that my son, Cameron, grows up as healthy and happy as possible just as much as the next person but setting aside my common sense and taking big risks on the unknown is not the way to get him there.

Whether it’s a mom, a friend, a veteran ‘expert’ or even someone with a P.H.D… no matter how much you trust someone, no matter how much you really want to believe… do your own homework first, and use common sense.

Is It “Autistic Person” or “Person with Autism”?

Posted by Stuart Duncan | Posted in Autism | Posted on 19-08-2010

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Just when I thought we’ve pushed the bounds of “political correctness” too far with the whole “Is it a Christmas Tree or a Holiday Tree?” debate, here we go with having to stick our anal retentive noses into the Autism community.

The idea is that we should “put the person first” before the disorder. And conversely, if you say “Autistic Person” then you are putting the disorder first and somehow implying that it has more importance.

I put a little more thought into this and have wondered at the following statements:

  • Would I refer to someone as being a brunette, a brunette person or a person of brunette haired persuasion?
  • Would I mention that someone is a Canadian person or a person born of the nation of Canada?
  • Should I refer to Mr Smith as Smith whom is a Mister?
  • Should job titles start coming after the name? CEO Steve Jobs or Steve Jobs, CEO?
  • Do we stop calling someone a cancer survivor a cancer survivor and instead say “a person whom has survived cancer”?

Now, don’t get me wrong, I’m all for being politically correct so long as it’s serving a proper purpose. These include proper formalities, curbing racism and so on.

However, for the sake of knit picking your own interpretation of what you think someone else may or may not be inadvertently implying on some other level of perception… is this really what we need to spend our time and energy on?

Again, don’t get me wrong, I am not dismissing the idea of putting the person first, never have, never will.. but only in a very real, active, sense.

Finally, let me put it this way, in conclusion:

In speech, Autistic is an adjective just like any other and therefore as important or unimportant as any other… including hairy, blonde, brunette, shaven, unshaven, tall, short, fat, skinny, striped or bouncy (oops, sorry, was just watching Winnie the Pooh).

If it offends you, then YOU are the ones giving it more importance than the person by being offended by it in the first place. YOU are the one who thinks it’s more important when you hear it and YOU are the one who gives it more importance by getting all upset about it.

The person that says “Autistic Person” had never considered ever putting anything first before their child until you came along and pointed it out.

Mario Bros Video Games As An Autism Treatment

Posted by Stuart Duncan | Posted in Autism | Posted on 18-08-2010

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It’s no secret that Mario is a big favourite with children and has been for decades now but children with Autism may see a lot of extra benefits from playing his games, you just have to be careful which ones and for how long.

First, let me say that I suggest you stick to the Nintendo Wii. The problem solving skills and hand eye coordination that you get from other consoles is good but the unique nature of the Wii really adds a whole other level of treatment that I will discuss in a bit.

The first game that we introduced Cameron to was Mario Kart Wii, in which you drive your cart in a race against the rest of the game characters, but instead of just pressing left and right buttons, you actually hold the controller out in front of you like a steering wheel and have to rotate it left and right to turn… further more, the more you rotate it, the harder you turn. This teaches your child the severity of his actions… how to do something a little bit to get a little bit of reaction.

More so than that, it’s a great introduction to video games in general as there isn’t a lot to it beyond pressing one button and steering. And for a first timer, especially at 3 or 4 years old, pressing a button and remembering to turn a controller is about the most multi-tasking that you could expect them to handle.

Cameron went from being behind in his motor skills to being right on par with others his age and a lot of it is due to Mario Kart Wii.

The next game proved to be more harmful than beneficial and that is the Super Mario Bros Wii game where four players can play all at once, and is modelled very closely after the original game. This game is played like the old console games where you press the left and right buttons, jump button, running button and has the occasional shaking action here and there.

The problem with this game is that it has 8 worlds to conquer and even the most expert player would take a while to get through it all. Which means that if you intend on limiting your child to an hour, 2 hours… 24 hours (who does that??), it still isn’t enough to win the game and therefore turning it off means an interruption in their game.

On the bright side, this lead to us helping him master his emotions, his expectations of him when it came time to be disappointed and so forth.  But, even the most level headed and prepared Autistic can still end up in a pretty wild rage filled tantrum when you turn off something they’re right in the middle of.

Cameron’s uncle bought him Mario Galaxy 2, which really exercises his motor skills as it immerses him in some world sized problems and really flexes his 3D muscles as he’s running circles around planetoids in the sky.

The problem comes, again, with turning it off. This game can take months to finish and so you will find yourself having to turn it off right in the middle of your child’s game and facing another tantrum.

Enter Mario Party 8… the latest Mario game that Cameron received for his 5th birthday.

Cameron absolutely LOVES this game and we have yet to face a temper tantrum. Here’s why:

The Premise
Mario Party 8 is essentially a big board game with mini games at the end of each turn. You roll the dice, move your squares, try to get to the star first and then, when everyone did their turn, you play a quick 1 to 2 minute mini game.

Set Game Length = No Tantrums
The number of turns is pre-defined at the beginning of the game, so you can set your child’s game to a quick 10 turns or a very very long 50 turns. It’s up to you and how generous you are feeling. Once those turns are done, the winner is announced and the game is done. This offers the perfect opportunity to pack it up until next time without any harsh interruptions.

Making and Allowing Choices
Instead of being forced in Mario, you get to choose from a rather large list of characters. Your child gets to choose their character, let friends choose theirs and even choose who the computer will be. This teaches your child that not everyone wants the same things that he/she does.

It can be very difficult for a young Autistic to understand that other people don’t want what they want… that they could possibly not pick Luigi when they picked Mario… they’re a perfect match, a team! It took Cameron a little while but then he learned and now understands that other children need to make their own choices.

Turn Taking
Once you’re playing, you’re forced into turn taking. There’s no grabbing at dice to take another turn.. the controls are given to the next player.. it’s set, no questioning it. You wait until your controller makes a noise and it’s your turn again.

Team Work
There are a huge number of mini games and each tests different skills. On top of this, it promotes team work as some games will be 4 on 4, but then some will also be 3 against 1 or 2 against 2. This means that you have to learn to work on your own, to work against everyone or be on a team with another person and work together.

Communication
Cameron can communicate most easily when he’s talking about something he loves and Mario is definitely one of those things. When he has a friend to play with, it’s easy for him to talk to him because he can show them what to do, teach them new things and get excited about game events as they happen together.

Level of Difficulty – Anyone Can Win
The game allows for people of different skill levels to play and everyone will have a chance to win. My wife and I can play with him and no matter how well we do, or he does, anyone could win. This means that your child has a chance at being super proud of beating his parents but it also means that they don’t have to take is so hard if beaten either because everyone gets a chance to win.

Fine Motor Skills
Not only does the game help in social aspects, it is also great for fine motor skills and even gross motor skills all thanks to the Nintendo Wii technology. With so many mini games, your child will have to punch, roll, turn, balance, point at the screen and more in order to do well. It runs the whole gambit of the controller’s capabilities.

Most children like video games and we all know that they do have their benefits in developing problem solving skills and motor skills but for us parents of Autistic children, it can be a whole other world of meltdowns and so we just avoid letting them play all together.

Mario Party 8 is a great solution as it offers more benefits than any other game we’ve tried or heard of thus far. Cameron has really excelled in so many facets of his life and is in large part due to this game. He takes turns with other children so much better now when playing regular board games, he lets his friends decide things for themselves now, he is just doing great.

As always, I don’t promise that your child will have the same reactions or benefits as mine since all children are different (especially with Autism) but if you’re tired of the meltdowns that come with turning the game off, Mario Party 8 may be a good game to try.

My only tip/suggestion that I must insist on you, play with your child! It’s a fun board/video game so don’t fear it, don’t just dismiss it because you don’t play video games… get involved, take the plunge. Playing with your child is not only beneficial but it’s also just about the best thing you can do as a parent. Be involved.

Family Dinner is Not What I Thought It Would Be

Posted by Stuart Duncan | Posted in Autism | Posted on 30-06-2010

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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.

Autism, It’s What My Son Has. Not The Other Way Around.

Posted by Stuart Duncan | Posted in Autism | Posted on 07-06-2010

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There’s a lot of controversy around this video that was put out in which Autism was made out to be a man, a predator, who was preying on our children… kinda creepy but for me, it really made me think about how those so disconnected with Autism must think. I know for many, it’s how they think of cancer, or other stranger issues like flesh eating disease. These are things that attack people, they move in, attack, grow and take over. I think for some people, it’s just easier to think of Autism in that way.

The truth is though, there is no growth, there is no outside entity moving in. It’s something you just have, it’s a part of you. For all it’s good (savants) and bads (violence, lack of communication), it’s just part of what makes you who you are.

I recently ‘tweeted’ a simple line that came to me after watching that video: “Autism, it’s what my son has. Not the other way around.”

And I couldn’t help but think to myself, why don’t I make more of an effort to convey that to people when I’m describing to them how my son is. He’s every bit the normal little boy that every other child they deal with is. He just has some foods he can’t eat, like other children with allergies would, he has some issues with being overwhelmed or over stimulated, I had the same problem as a child, I’m not Autistic.

Autism is something that forces me to have to give people certain ‘tips’ and things to look for when they get to know him. They don’t have to put on a breathing apparatus or wear rubber gloves for fear of catching it, and they don’t have to completely alter entire systems or routines to suit him. They just need to be aware of a few things and all will be fine.

Some parents are not so lucky, I know this… and truly, my heart goes out to you because I can’t begin to imagine what that would be like. But for those of us who can get our child to talk, to be a part of the things we do… remember, they have Autism, they have issues, the Autism doesn’t have them.

The Hardest Part of Autism – Looking To The Future

Posted by Stuart Duncan | Posted in Autism | Posted on 04-06-2010

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I’ve had some people ask me what the hardest part is of having an Autistic son is and I kind of want to smack them. Don’t get me wrong, it’s a fair question but really, it’s an extremely overwhelming question.

Let’s see, we’ll start with the basics like his refusal to eat most foods, he’s never touched meat of any kind and then add on the fact that the stuff he will eat, he can’t because it makes him out of control. Then there’s his constant temper tantrums, more so a year ago than now but still happen. There’s his constant sadness as he comes home from school telling us how he has no friends. There’s the fear we have any time anyone anywhere ever has to take care of him, whether it’s family, baby sitters, teachers, sunday school teachers… anyone. Please don’t enrage him, please don’t feed him! There’s the stress that goes into every outing… right now we need to go on a week long trip, we have no idea how we’ll feed him since hotel rooms and restaurants aren’t his best situations to be in. Then there’s the financial burden, not only is there $150/hr speech therapy sessions but simple things like gluten free food cost a lot more than normal groceries. Let’s not forget that we picked up and sold our house, at a loss, to get him to a city where there’s a school that is perfect for him. That’s a good start….

On top of all of this there’s one thing that is actually harder than all of that, one thing that my wife and I have sat down and discussed many times and laid awake at night thinking about…. Cameron’s future.

I think most parents think about their children’s future quite a bit, most dream of great things and have their worries. It’s safe to say that most parents simply wish for their children to have a better life than they did themselves.

However, when your child is Autistic, you have a whole other world of uncertainty added on… one where the dreams fade a little, one where the hopes of a better life become more a matter of hope than desire. When your child is Autistic, all you want for them, is to be normal.

I think some parents pray for a savant, a child who’ll find that one truly amazing and indescribable talent that will bring the media running and make your child a prodigy… but I think most parents, like us, only want for our child to be able to grow up happy, to be able to finish school, have friends, get a good job, have a family of their own and all those good things that many people simply take for granted.

I think, for me anyhow, the hardest part is looking to the future and thinking to myself, what if he doesn’t have that? What if his life only gets harder? I mean, having no friends is hard at the age of 4 but it can make a teenager suicidal. What if he never has a family of his own? No one to love, to care for him other than his parents?

We can sell our house at a loss, we can handle the craziness when someone slips him a cookie that he shouldn’t have, we can handle the tantrums and the sadness… we can even handle having to eat mr noodles for a while to make sure he gets the things he needs… but looking to the future is something I can’t really handle. It’s something I don’t like to think about.

I’ve learned that all I can do is put it out of my mind and focus on right now. I just have to keep eating those mr noodles, keep helping him through the tantrums, keep getting him into the schools and programs he needs and maybe, just maybe…. hopefully… the future will sort itself out. Because if I spend all my time dwelling on what’s hardest, I’ll miss what is the best…. and that’s here and now.