The Hardest Thing My Son Has To Do is Love

It’s always seemed odd to me that an Autistc child is so prone to letting negative emotions out like a hailstorm but the good emotions so easily get lost, deep and buried behind cold lost eyes. No one seems to be able to provide a solid answer but violence, aggression, outbursts… these are normal and even to be expected from a child with Autism, especially the more severe cases. What’s also to be expected is that the child will likely never want to hug you, kiss you or say ‘I love you.’

Now, for those of you reading that has a child or children, and they’re not Autistic, I want you to imagine what that must be like. No hugs good bye, no kiss goodnight. You say ‘I love you’ over and over again and never get it back. But if you tell them no, they can’t have an electric toy in the bath, they’ll instantly go into a tantrum and try to hit you in the face.

Does that make you feel loved?

That’s what life is like as a parent of an Autistic child. Not every single child, but as a general rule, that’s pretty much how it is.

I think, the hardest thing to come to terms with when raising a child like that, is that they do love you, they do want to show you… they just can’t. I compare it to an arachnophobic person being asked to walk into a room with one thousand spiders. Likely, if they really really love you, they’ll do it to prove it… but it’ll be the hardest thing they ever do. I picture my son walking into that room every time he gives me a hug… and he does hug me.

The one thing I’ve learned more than anything over the last 2 years is patience… to have far more patience than I ever thought I could have, even more than I ever thought was possible in a person. You have to find a way to keep reminding yourself, to keep telling yourself that your child not only loves you, but they have a hailstorm of love buried in there… it’s just not coming out like the temper does. But it’s there.

If anything, he may love me even more than he would if he didn’t have Autism… even though he may not understand emotions or know how to express them, I bet he feels them every bit or more than others. I just have to never forget that it’s there.

One night, as I tucked Cameron into bed, I told him that I loved him and he looked at me. So I asked him why he never says ‘I love you’ to mommy or daddy. He just sorta shrugged and so I asked if it made him feel embarrassed and he nodded yes. I asked if it was hard for him to say it and he nodded again. I assured him that it doesn’t make us mad, it doesn’t make us sad… we understand and it’s ok. I think it’s important for him to know that we know how hard it is…

Then he did, as he does quite often… he put his index finger tip around to the tip of his thumb, much like you’d do if you were to do the ‘ok’ sign. Then he put it up in front of his face and looked through it with one eye, and moved it back against his face, still with his eye looking through the opening.

I then asked him why he does that, to which I got no reply. I asked if it helps him to see better, like glasses and he just looked at me… so I asked if it helps him to see me and he said ‘yeah’. So I asked how it helps and he glanced around a bit…  I asked him if doing that helped him to not see the rest of the room and he again said ‘yeah’.

Cameron did this motion, almost ever night, quietly, sometimes completely without my notice, as his way to see me, and only me. Without interference or distraction. It occurred to me then that he had been doing this for quite some time, months… a year? I can’t remember but it’s been a while and it was always something I just thought was something silly he started doing.. like a child looking through the middle of a roll of toilet paper.

But it was so much more than that. I like to think that it’s his way of telling me he loves me…. that… he sees me.

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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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