Archive | August, 2010

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

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.

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

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.

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Mario Bros Video Games As An Autism Treatment

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.

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.

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How To Get A Child With Autism to Sleep?

This is something I’ve seen discussed quite a bit lately, it’s a fairly common problem but in various degrees. Some people can not get their child to fall asleep, others do fall asleep but wake up constantly and then others sleep alright but wake up really early. Like all things Autism, the problems are never the same.

I can’t give you an answer that will definitely work for you because there simply isn’t one… all the problems are different, all the solutions are too. On top of that, as I always say, I’m no expert. I can only tell you what has been working for me and suggest you give it a try… but don’t be disappointed if it doesn’t work for you.

Cameron has had a few nightmare nights here and there where he wakes up screaming… even night terrors. He’s also had a lot of nights where he just wakes up and calls for me, or comes to me, or just wanders out into the living room and sits there until he falls asleep on the couch. For a long time, he’d wake up at 5am no matter how tired he was or what time he went to bed.

We’ve pretty much run the gambit of various issues.

The more and more I wrote about how the senses of an Autistic works, the more I started to think about what his senses might be doing while asleep. You see, I believe that sleep does not stop the flood of sights, sounds, smells and even feelings from invading the person’s mind.

Are you watching a movie in the living room while they sleep? Are there cars going by outside? Does light come in from the window? Is there a clock ticking somewhere in the house? A faucet dripping? A pet awake somewhere, maybe eating? Are the sheets irritating the child? Is the bed hard enough? Soft enough?

I think that all of this is easily overlooked because a child that’s sleeping should not notice any of it… but for Autistics, maybe they do!

Going by that reasoning, my wife and I put black blankets up over the windows in his room, no light gets in at all… and then we put in either a white noise system, or the air conditioner (which sounds a lot the same).

So from bed time till morning, there’s no light and the sounds around are drowned out. Keep in mind that it doesn’t have to be loud white noise, just something else to focus on. The white noise is in the room with them, the other sounds are not.

We have not moved on to the sheets yet, mostly due to lack of $$…. but already we’ve seen a huge difference. Cameron now goes to bed on his own, he insists on a bed time story… and then he sleeps soundly until 7, sometimes 8am. The sunrise does not affect him, the sounds of cars and trucks going by does not affect him. He is free to sleep, oblivious to the world around him.

Strangely enough, getting the extra sleep was actually a bad thing, as he seemed to regress for a bit… but after a week or so, we saw a total reversal and found that the extra sleep was a huge benefit and well worth the effort.

I’m not saying that what will work for you will be so easy, but then again, maybe it is. Go into your child’s room and sit on the bed. Really stop and get a feel for the room. Listen for everything. Look at where light may be coming in or even moving. Is there an alarm clock? Imagine your child in there while fully awake and all the extra things they would pick up due to their sensory processing issues.

It’s worked for us so far!

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Are You Willing to Make Sacrifices? Here’s What We Did

Like most parents, my wife and I had a sense of dread the moment we received our child’s Autism diagnosis… his entire future, as well as ours, quickly became very uncertain. One of the biggest was school.

For 2 years, we contacted the school board back and forth in an effort to ensure that our son would have help, would have programs and get the resources he needed to have a fighting chance at a decent education.

For those of you who may be reading that don’t know what it’s like, even a high functioning child with Autism will have a monstrously huge struggle in school without help. The crowds, loud noises, the fear that any child gets, tons of information bombarded on them, the muscle/coordination issues that many Autistics have…. it’s just all so much to deal with. The biggest is the anxiety.

The end result is a child that regresses, goes no where, constantly gets bullied, has meltdowns and so forth. It’s not pretty.

So we battled for over 2 years against a severely under funded education system and as our child approached pre-kindergarten age, we were losing.

In June of 2009, we found a school in Porcupine Ontario Canada… a little tiny side town of a little tiny city (Timmins) way up in northern Ontario, a school named Golden Avenue Public School that had actually won awards for it’s Autism program… and yet, no one had heard of it!

This little school in the middle of no where literally dedicated it’s entire basement floor to Autistic children, where classes are split between severity level rather than age. Also, my son’s class has 8 children in it, one teacher and 3 teacher’s aides! That’s 2 children per adult. Plus, they work very closely with us, doing as we ask, and they send home daily reports and we send reports each morning so that we can stay in constant contact. They even allowed peanuts and other foods not usually allowed in schools anymore because they recognize the severely limited diets that many children with Autism have.

Sound like heaven? It is. But it comes at a price.

As I said, we found it in June. So, with virtually no money (was a spur of the moment decision), we contacted a realtor, bought some paint and supplies, started doing last minute renovations on our house, gave away almost all our furniture and exercise equipment, sold what ever little we could, packed up the rest and moved…. in August!

On top of that, because it was so sudden and we ended up with less than no money, we moved in with my inlaws (my wife’s parents) from August to April. While it certainly wasn’t terrible, you can imagine how defeated you feel having to move in with the parents because you have no where else to go. We were just lucky that they live in the same place as the school that happened to be perfect for our child otherwise, we have no idea what we would have done.

Cameron started school in September and 2 weeks in, we sold our house without even being there. We sold it at a loss. We’re still paying for it now, a year later.

We’re in a town that I really don’t want to be in, it’s a 3.5 hour drive to next closest city (there are other towns but a real city is far), the movie theater here has 4 screens, 2 of which have Dolby Stereo sound, the other two is just regular stereo (that’s right, no such thing as surround sound) and all the other luxuries of the city that I had become accustomed to… not here.

I don’t mean to make it sound terrible here, just that it’s a huge difference for me. It’s not what I wanted nor where I expected to be.

But it’s worth it because I can’t even begin to imagine what life would be like, what my son would be like, if he had gone into a city school with 30+ other children in his class, a teacher that had no idea what Autism even was and was left to fend for himself.

And this is just a drop in the bucket (as they say)… many others make much larger sacrifices and while it’s terrible that it comes to that, it is truly amazing to see how far a parent can go for their children.

I’m in a rental apartment, still paying for the 3 bedroom house that was the only real home that my boys ever knew, in a little city in the middle of nowhere with almost none of the resources/luxuries I’ve been used to for so long… but the alternative was not acceptable. My boys come first… Autistic or not.

If the education system or the government or society in general can’t do what we need from them, then we’ll have to do what we can on our own, what ever the cost.

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