Our Greatest Wish, Our Greatest Fear

We, like most parents of an Autistic child, have always had but one simple wish for our son… that he could be normal, or at least, have a normal life. We look towards the future and all we see is heartache, sorrow, misery and solitude. Even at the age of 4, we could already see how hard it would be for Cameron to have friends, to socialize, to be normal enough so that he won’t be teased.

We don’t know if he’ll ever live on his own, we don’t know if he’ll ever have a girl friend… much less a wife or family.

There is just so much we fear for him that it literally keeps us up at night talking about it. We are powerless to do anything about it but still we stay awake at night wondering…. what can we do?

However, as I lay awake last night thinking about it yet again, I began to realize that my greatest wish of having him be normal, was also my greatest fear. What if Einstein truly was an Autistic person? What if Tesla was Autistic? How many great minds through out history have changed the world all due to the fact that their brains were simply wired differently than a ‘normal’ persons? And what if someone had made them normal?

I got to thinking about how every parent sees unlimited potential in that new baby the first time they hold it in their hands… that tiny little bundle of new life could change the world, with the proper guidance and support.  Then I got to thinking about how there are some truly amazing Autistic people in the world.

I would like to share some examples of current day brilliant Autistic people:

Temple Grandin.
This woman did not speak until she was four, and hated most of her childhood but eventually went on to finish college with a doctorate and is a successful scientist and public speaker. She has designed more than half of all the slaughter house systems in the US because her methods are more humane and more efficient. And if you doubt me, Time has picked her as one of the 100 most influential people of 2010.

Stephen Wiltshire
Stephen lives in a world of his own, very quiet, very alone. He didn’t say his first words until he was 5 but when he turned 11, he drew a perfect picture of the city of London after having flown over it only one time. Since then, he’s been named the ‘Human Camera’ because he can successfully draw every detail of any city he flies over. Here is some a video of him flying over, and then drawing Rome, right down to the number of windows and columns. You can read more about him here.

You can read up on some more in this article and keep in mind, since Autism is still largely unknown to us, many others through out time could have been Autistic.

Now then, that brings me back to Cameron… if by some miracle, we found a way to make Cameron be ‘normal’, what might he be missing out on later in life. What might he have accomplished that we would be taking away from him.

I think back to the day I held him in my hands for the very first time and a whole world of potential and possibilities flowed through my mind, I thought he could grow up to be amazing! As he got older, he was compared to Einstein because of his delayed speech and I got to thinking… comparing him to Einstein, for better or worse, is really very amazing.

Now all I know is, if there’s greatness there, it can’t be forced or held back… only guided. And if it’s not there, that’s ok too. He’s already been compared to Einstein, that’s way better than I can say for myself.

I can’t wish for him to be normal and for him to be exceptional at the same time. That’s not fair to him, that’s not fair to me. He is who he is, and to me, he’s already very amazing.

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Tugging on My Ear – For Comfort, For Love

One of my earliest memories of Cameron, apart from his birth, is how he always had to be playing with my ear lobes, or my wife’s. In fact, he would get down right mad if we didn’t let him or he wasn’t able. It was such a big part of his life that he would do it in his sleep. If he fell asleep on me on the couch, or slept in our bed, his hand would wander until it found my ear even though he was fully asleep.

All children find something to do that soothes them, whether it’s sucking a thumb, holding a favourite blanket or stuffed animal… we just assumed that this was his way of soothing or comforting himself. As he got older, it became more of an issue for us as he needed it more and more, even if it meant us having to be bent over uncomfortably just so that he wouldn’t be furious.

It wasn’t until years later, after his diagnosis that we discovered that it was so much more than that. When Cameron first went to school, we came to realize that his biggest fear, his biggest issue is feeling unsafe. Not just unsafe, but that those around him are not keeping him safe.

You could argue that ‘soothing’ is a form of helping yourself feel ‘safe’ but I think it’s more than that. Cameron would not do the ear thing with just anyone, it wasn’t just a motion that helped him feel better.

He tugged on our ears because it kept us close, it kept us in contact and it made him feel safe.

More so than even that, because he was unable to speak and is still very much unable to express his stronger emotions, it was his way of saying he loves us and he needs us.

I think many people dismiss Autistics as being unable to handle and express emotions but the truth is, if we look hard enough, if we don’t look passed the little things… they are telling us, in their own way.

Cameron was telling us a lot with his cute little self soothing technique, I just didn’t know how much.

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Autism Denial – Einstein Didn’t Talk Until He Was Four

In my experience, the most likely person to be in denial of a child having a disorder like Autism is the parents, primarily the father. However, in my family’s case, my wife and I never denied it for a moment, everyone else did!

At first our family, trying to be supportive, told us that some kids are just like that, some kids are just quirky, some kids just don’t talk until they’re older. When you observe each individual ‘sign’, they weren’t wrong. Every sign that a child has Autism can be viewed as just a quirky thing that some kids do, when you look at them individually. But when you group all the signs together to form a diagnosis, you realize that they’re not just quirks.

Unfortunately, no one really spent time with Cameron as much as we did so no one could really ever know. Being in denial was a matter of convenience for some because it also meant being supportive at the same time, helping us feel that there was nothing wrong. While that is appreciated, it’s not what we needed, as parents. What we needed more was information. “Awareness” means more than just knowing it exists.

The next case of denial came from the most unlikely of sources, our family doctor. He is an extremely smart and gifted doctor and has a wealth of knowledge in many areas, we are lucky to have found him. But when we brought up the word Autism with him, he immediately dismissed it, assuring us that his quirks and delayed speech are fine.. there was still a lot of time for him to “catch up”.

Did you know that Einstein didn’t talk until he was four? Did you know that he didn’t form complete sentences until he was nine? And he was fine! He was brilliant.

Perhaps, but I’d venture a guess that if Einstein were a child today, he’d be diagnosed with Autism. And the thing with Autism is, no two children are the same. maybe he beat the odds and went on to become a brilliant man, but obviously that isn’t true for everyone. Telling me that Einstein was a delayed speaker does not put my mind at ease when I look at my son at the age of 2.5 who is still unable speak.

Eventually we got into workshops, got speech therapy for Cameron, learned all new ways to teach him, diet tips and more and by the time Cameron was 3, he had a pretty full vocabulary. He’s approaching 5 at the time of this writing and he can speak as well as any other 5 year old.

The reason I mention this is that we’re still facing denial from family and friends who now approach us saying “he is so smart, he seems to be a perfectly normal child… are you sure he ever really did have Autism?”

It hurts a little, to have people dismiss 2 years of very hard work that we’ve done… saying that he must have been perfectly fine all along. But it’s also very flattering and a wonderful compliment as well. After all, what could be better than for people to think an Autistic child is not Autistic??

Those who are close enough to us to spend a decent amount of time with Cameron know the truth. They see it. They realize the extent of what Autism can do when a child is at their worst.

All I can say is, if you suspect Autism, or you know someone who suspects it in their child… don’t deny it. Don’t be supportive by comparing their child to Einstein. Instead, help them get the information they need to find out for sure. Maybe, with your help, they’ll get their child all the help they need that in 2 years others will ask them “are you sure they ever really were Autistic?”

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Practicing His Thai Chi

From the moment Cameron was able to sit up on his own, he would pick up one toy in each hand and begin to move them from side to side directly in front of his face. And I don’t mean just little movements, he would literally extend his arms as far out as he could, move them from one side across his face over to the other side until his arms were fully extended again and then back again. This motion would be repeated far more times than I could count.

He wasn’t just moving them in front of his face, he was moving them passed his eyes. And he wouldn’t watch them go by, his eyes would stay straight ahead as his toys would pass by.

At first, people would comment and joke and we, not knowing any better, would tell people that he was practising his Thai Chi, because that’s exactly what it looked like. Over the course of a year, however, we began to realize that this was a symptom of something that wasn’t so funny.

Since then, we’ve come to learn that it was the gluten in his food which was acting like a narcotic in his brain, causing his toys to blur and leave trails as they went by. Imagine a one year old, high on drugs, getting spaced out and watching objects go by leaving trails in their wake… that’s how it was for Cameron.

A doctor suggested that even though there was no concrete proof of it, that sometimes a gluten free, casein free diet can really help when dealing with Autism. We had tried several different things and so we tried this diet as well, cutting out his pasta and no more sandwiches. Within 3 days, we saw a radical difference in Cameron, he just seemed so much more aware of his surroundings and cut down on his Thai Chi movements quite a bit.

Do I now recommend the diet to other parents dealing with Autism? Absolutely.  Do I guarantee it’ll help. No, there’s no guarantees.

But our house is mostly Thai Chi free. We still see it if he’s very stressed or overwhelmed, but it’s rare these days. And even though it’s still no joke, the progress makes us happy.

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Welcome!

As a father of  a child with Autism, I find discussions and information around the Internet at an ever growing rate, which I find encouraging. But it seems to be almost exclusively from moms, about moms or at the very least, from a mom’s perspective.

That’s fine really, since no one will ever be able to take the place of a child’s mom, much less when the child has special needs. I can tell you, from my own experience, that no one is more important in my son’s life, nor more capable of telling you everything about his life and his disorder than his mom is, however I can also tell you that being a father comes with it’s own set of challenges and experiences.

I think it’s no secret that men in general are simply less capable of dealing with emotion, family hardships and probably hardest of all… accepting that their child isn’t perfect and there’s nothing they can do about it.

We, as men, bottle it up and would rather find our own hammer and nails, and keep working at it until it’s fixed rather than talk to someone about it much less be taught what to do.

I am a father of two boys, my oldest has Autism and I may be one of the few male voices out there, but I’m going to tell my story anyway. Maybe it’ll help some other fathers out there, maybe even some mothers.

Even if it doesn’t, it’ll help me down the road and possibly even my son… this is my journal, my introduction to Autism.

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