Archive | June, 2010

How Do You Change The World For Your Autistic Child When You’re A No One?

By on June 14, 2010 in Autism

This is not a rhetorical question, I’m sorry if you are here hoping to find an answer… because I don’t have one. I’m kind of hoping that some of you will reply with some ideas because I’m fresh out. I don’t mean to sound like a downer, but let’s face it, we all want what is best for not only our own children but also for all those yet to be born, with or without Autism.

None of us are Superman, and even he can’t change the ways of man… the greed inherent in humans shows it’s ugly head to us every single day with oil spills, economic collapses built on risky wheeling and dealing at the top, pharmaceutical companies putting profits before health and so on and so forth. How does the average person like me contend with all of this?

I would like to think that if I stick with this blog, if I stick with my minuscule little presence in the ever growing online Autism community, maybe I will play some small role.. maybe my ever so tiny voice will be that last little bit needed to push the community voice from unheard to world changing… then again, I could win the lottery too.

Becoming part of the community has been great, I’ve met some wonderful people that truly are making a difference.. we all know how much awareness Jenny McCarthy and Holly Peete have raised, but they’re celebs. Some people have started up amazing organizations such as Autism Speaks but they’re philanthropists and entrepreneurs. One amazing dad is even running 60 marathons to raise awareness… but then, he’s good at that.

Me? I… hmm… I don’t really have any skills to speak of. I am not a doctor, scientist, athlete, celebrity, no business skills, don’t have a clue about raising money much less having a charity, I don’t have shirts to sell, no radio station, I don’t have wise words of wisdom, I have no real advice to give or knowledge to be writing articles/books and the list goes on and on. I’m just your average guy that started a blog with a terrible domain name and decided to jot down some of my experiences. That’s the best I’ve got and it… gets 20 visitors a day.

I feel so very lost in a world of great people doing great things while I sit here and try to write something positive.  I’ve written some pretty negative stuff actually, but I never do hit the publish button. It’s a bit like therapy at the time, get it all out, into words and then erase it. I figure, maybe I can’t change the world but I do know that bringing other people down won’t help, plus, that’s not the purpose of me sharing with you.

In the end, I guess all I can really ever do is do my best for my children. To always be there, always support them, always encourage them and just do my best to teach them right from wrong… and from there, I hope for the best.

I can’t change the world no matter how much I really wish I could… I can’t even make anything better in my own life. But I’ll never stop trying to prepare my boys for what is out there. I’ve missed my chances, if there were any… but my boys have a long life ahead of them filled with limitless possibilities.

Maybe they will change the world. I can’t do much, but I can dream.

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Sensory Issues – How Do They Affect You or Your Child?

By on June 11, 2010 in Autism

Sensory issues are often a bi-product of having Autism, an unfortunate little tag along issue that many Autistic people get to tack onto the rather large list of issues they already endure. They come in all shapes and sizes as well, much like the rest of Autisms little gems, some people can’t handle loud noise, bright lights, strong tastes… some simply can’t handle multiple sounds, flickering lights or any taste at all.

In our case, Cameron has a problem with loud noises and food textures. If we put on a movie too loud, or turn up the music, he’s the first to speak up about it being too loud. That’s not too much of a problem, we can keep it quiet… but it does mean things can be a challenge such as taking him to see a movie at the theatre.

The big issue comes from his food texture problem… there’s literally only a handful of foods that he will eat. He’s never eaten meat, except what we can grind up and hide in his food. He’s never eaten any fast food, refuses to even try french fries and doesn’t want to eat most vegetables. The only fruit he likes is bananas and won’t eat berries or nuts either.

Luckily, my wife is very creative and is very good at finding the foods that make up for these things, such as eggs, bananas, peanut butter and beans. These foods alone make up for almost all of what he’s missing and we can find ways to make up the rest… and we pad it with mashed potatoes and rice pasta, which he really likes.

But imagine, no gluten (wheat) and no casein (milk) and then take all meats (including fish and chicken) and almost all veggies… what’s left??

Quite literally, we find ourselves deciding on which of the 4 meals he’ll have for each meal… because that’s what it boils down to. We were quite concerned at first but after visiting a child nutrition expert and having all his blood levels tested, he’s doing just fine.

Sight and touch and other things seem to be right on par, or pretty close. It’s just the pesky food texture thing that drives us wild.

I’ve talked to a lot of other parents however that have other issues, such as having children that must wear special head phones to tone down the sound levels, or some that wear tinted glasses and even some where they virtually never touch their child.

On one hand, I curse this stupid Autism for already making life hard enough and then having to tack on something so dumb as this, just to make things more inconvenient… on the other hand, I kinda think it’s like having a super power, like Wolverine (xmen comics) where he has a heightened sense of smell, taste and hearing.. like an animal. Maybe my boy will grow up to be a super hero? taste texture man??  Uhmm… anyway…

If your child has not been diagnosed with Autism but has these types of sensory overloads that seem almost painful for them, definitely get them checked. It might not even be Autism as there are simply conditions dealing with sensory processing and sensory integration disorders.

Most importantly, I implore you, if your child can’t stand the lights, the sounds, the taste, the feel of something… it may seem trivial, or even stupid and you will likely feel compelled to just have your child deal with it… but it could be something so much more than that and you could be causing them real pain/discomfort. If you pushed them through something and found out later that it was a real issue, you’d probably feel pretty bad… it’s better to listen to your children and at least check and be sure.

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How Old is Autism? Is It a New Thing or Has it Been Around a Long Time?

By on June 10, 2010 in Autism

I’ve seen this question asked a lot around the internet, and have been asked by a lot of people “Why is there so many people getting Autism these days?”

Keep in mind, I’m in no way telling you that this is how it is, it’s just my take on what I know based on what I’ve read and come to my own conclusions…

A lot of people blame vaccines, if not for actually causing Autism in their child, then for at least triggering it or being the final straw that allows it to manifest and steal their child away from them. The reason I bring this up is that it, in my mind, distorts their perception of the origins of Autism. Naturally, no one knows what causes it exactly or how long it’s been around, but I’d venture a guess to say that it’s been around a lot longer than our vaccinations.

For example, just yesterday I was discussing with someone how, when we were children, we had a lot less vaccinations than kids do today. Which is true, but then I think to people like Temple Grandin who is now 60, which is near twice as old as I am and how little she must have had to endure in the way of vaccinations. Also, I know some people that are Autistic and never once been vaccinated. And Autism happens in countries where vaccination isn’t even available! So, perhaps it’s a reason for the spike in occurrences but certainly not the cause. So it’s safe to assume that Autism was around before vaccines became a big money grab for pharmaceutical companies.

My grandmother, who is 75, asked me why there seems to be so much Autism these days, to which my reply was… are you sure there’s more now? It was in that instant, as she asked me, that I started to really contemplate it. My first question back to her was “when you were in school, was there a ‘special education’ class where the ‘slower’ kids were put?” and she said yes, there in fact was. I think most of us can remember such a class or classes in our school.. some had a trailer which separated them from the building. She said that those children didn’t talk, or would scream a lot, or needed a lot of extra help in learning things. Hmm… that sounds familiar.

The whole notion of Autism wasn’t even around until 1910, and even then it was used to describe schizophrenia, until 1938 when Dr Asperger used it to describe a much more specific disorder, the one we know today. That seems far enough back but in fact, even then it was still considered just to be an anti-social thing that children had due to “refrigerator moms” not loving them enough.

In the meantime, people have said that Isaac Newton, Albert Einstein, Mozart, Van Gogh and more quite likely had some form of Autism… it’s impossible to be certain obviously, but if true, then Autism could date back hundreds of years.

Now, we come back to present day and ask, why is there more now? Well, I’m no scientist so I can’t tell you for sure that there is or isn’t more cases today just that, in my opinion, I think it’s mostly a matter of people becoming more aware. I know people right now who’s children are obviously Autistic, but they’ve never been diagnosed. The parents either are clueless, simply not aware of Autism at all or are in denial. I read all the time of children being diagnosed at 2, 5, 9… even 15 years of age.

Remember, the doctors give the official diagnosis that gets counted but it’s the parents that have to make the initial diagnosis. They’re the ones that have to recognize, accept and seek out the diagnosis from a specialist before their child is counted.

Going back 5, 10, 20 years ago, there were very very few doctors that could make that diagnosis, much less parents that could recognize it. I mean, it wasn’t that long ago that moms were told they were crappy parents and therefore the cause of it. Why would they go to a doctor to hear that?

Do I think that there are more cases now than 100 years ago? Sure, it sure seems like it. Do I think that there’s some force causing a huge fluctuation in the numbers? Not so much, and I’m probably mostly alone in this thinking but I think given it’s long history, given how parents are becoming more aware and seeking diagnosis more now than ever before, given that there are more doctors and facilities to make a diagnosis… the numbers will just naturally go up all on their own even if the actual number of Autistic children don’t.

The question is, if we could have every single Autistic person counted now, and count every single one 5 years from now, taking out all the variables such as parents who don’t know, the ones that have no way to get a diagnosis, the ones that are simply getting a diagnosis later in life…  would the numbers be that much different? And if so, how different?

I would love to hear what you think… did you have a special ed class where “slow” children were placed even though they were never “diagnosed” with anything? Do you believe that Autism is a new thing that’s just coming on due to vaccines or pollution in the air?

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Lesson Learned: Always Have a Parent Present

By on June 9, 2010 in Autism

Shortly after getting Cameron diagnosed, we quickly found ourselves in a world of waiting as programs and services were all under funded and over filled. Because speech was our biggest priority, we bit the bullet and forked out the $150/hour it took to get our son in for speech therapy right away… the condition was that my wife, his mother, was able to sit in for each session to not only be a part of it but to learn what methods to continue reinforcing once our son was home.

After a little while and some good progress, the free speech therapy program was available to us which, at the time, was very welcoming since we really were in no position to afford $150/hour. So we quickly shifted him into the new program where we quickly realized that not all therapists are created equal.

This lady would give Cameron a toy and a task to perform with it, if Cameron wouldn’t or couldn’t do it, she would take his hand and force him to do it. Now, I would have thought that lesson #1 with Autistic children would be to know better than to even make contact, much less hold them and position them in such a way. This sort of manipulation did not sit well with Cameron and he got quite upset.

Then, once the task was performed, she demanded that Cameron put the toy away immediately after. He had just started to use this new wonderful toy and was now being told, and then forced to put it back.

This kind of hand holding and give and take process with the toys was very counter productive and would ultimately set him back several weeks. Rather than learning how to speak, he was learning how to regress… to shy away back into his shell further.

Luckily my wife is very hands on, she stays home with him full time and was able to be there to witness this. After discussing it together, we felt that we had no choice but to speak up and insist that my wife be in the room during these therapy sessions… and that most of all, that some things are made clear, and changed.

I’m sure you can tell by my tone that we expected a struggle in getting this to happen but no, they were very receptive and even though they suggested that she not be in the room, they allowed it, and they changed how they approached our son.

We saw immediate results and Cameron did very well, so long as she never grabbed him by the hand and she gave him ample time to explore and discover the toys he was given.

The lesson we learned was that you can not just hand over your child to anyone, no matter how well trained, how well paid or how highly recommended they may be… ultimately no one knows your own child as well as you do and what they think will work for most children might not work for yours.

Since then, we’ve been to several other programs and are even getting started with some programs now and the first thing we tell them is that we insist that his mother be there during the sessions. If they truly want what is best for our son, then they won’t deny us.

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To Infinity… And Beyond!

By on June 8, 2010 in Autism

Toy Story is a pretty great movie in that, no matter what your child is like, they’re probably going to relate to either Woody (the funny, very nice, kinda quiet good guy) or with Buzz Lightyear (the loud, arrogant, strong, proud, no nonsense good guy). It’s almost a window into your child’s inner core as you watch them pretend to be one or the other.. you can see which they would like to be.

I’ve only recently introduced Cameron to these movies, since part 3 is coming out this month (there was always newer better movies coming out so I just never got around to them) and he loved them, as I knew he would… but what I didn’t know was who he’d pick to want to be.

Cameron, being very skinny, very tall and funny and quiet…. picked Buzz Lightyear! And for his friend Woody, he picked his little brother Tyler, the shorter, stockier, louder one. To look at them and to even know them, they were mismatched. Chances are, no one would expect Cameron to pick Buzz Lightyear.

What it boils down to is his simple wish to be able to fly and shoot laser beams. Not overly enlightening or heart felt as I would like to be conveying to you in an effort to get more readers but there you have it. After that first day of watching the movie, he was not overly eager to go to school because he wanted to watch it again but when I told him his rocket ship was coming, instead of his bus, he climbed right on.

A little while later I talked to him about it and asked him if he knew what infinity meant. Of course, he said no and so I described it as “as far as far can go… if you went to outer space and kept going, it would be the furthest you could go”. At which point, he got all excited and said that he could go that far and proceeded to run around the house.

It likely didn’t mean much to him beyond just being silly but to me it kind of meant something more… that he really could go “as far as far can go” if he wanted to. That if he really wanted to, he could fly. That if wanted to he could…. oh jeeze, I hope he never gets a laser beam.

Anyway, the end result is that watching him want to go as far as far can go and then go further… helped me to feel pretty good about his choice to want to be Buzz Lightyear.

Maybe it’s just me wanting to find the tear drop symbolism and all that mushy good stuff. I’m quite happy with him shooting for the stars rather than wanting to be a rootin tootin cowboy now that I look at it the way I do.

To Infinity and beyond!

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