Tag Archives | love

What a difference six years can make

By on July 29, 2011 in Autism

Yesterday was Cameron’s birthday… the day he was born… 6 years ago. I originally started writing this post yesterday, to be posted on his birthday but we did so much the whole day that I never did get that chance.

Even though he’s taller than many nine year old children, he’s still and always will be my little boy.

If you have a few minutes, I’d like to give you 6 years.

Once upon a time, I think it was a Thursday…

cameron 0 days old

Cameron - 0 days old

Showing up at the hospital at 8am on the 27th, my wife was “induced” at 11am… wait, wait, wait, push, push, push… my beautiful little boy was born 14 hours later, after 1am on Thursday morning.

That whole first year was amazing… having this little baby sleeping on my chest as I lie on the couch, feeling his little fingers grab onto my finger.

It was everything that parenthood was meant to be. Even the 3 hour feeds all day and night. Friends and family would look at me with this wide smile, sarcastically asking how much sleep I was getting or how tired I was… to their disappointment, I was more than happy with how it was. I don’t even remember how much sleep I got, all I know is that I would have been happy being awake for the whole year… so that I wouldn’t miss a thing.

I loved it.

Enter the villain of our story

first birthday - cakeOn Cameron’s first birthday, my wife had this wonderful vision of a smashed up birthday cake all over the place. She had one made with 2/3 icing and only 1/3 actual cake… this makes it easier to get little fingers into and spread around.

But that didn’t happen. It turned out that we had the only little boy in the world (or so we thought at the time) that didn’t like to get dirty. My wife took his hand and buried it into the cake, which fascinated Cameron but again… it wasn’t what we had hoped for.

With the help of some off camera funny faces, we were able to get the picture that we thought would make it all… “normal.” It was what we had to do to get what we wanted. Not what he wanted.

On top of that… his entire first year was without any words, toilet training and without any more snuggling on the couch together.

His first year, he had to spend a good 20-40 minutes with me on the couch at the start of each day or else he’d be upset.

That hasn’t happened since.

The battle begins

After Cameron turned 1, he spent most of his time separating blocks by colour, lining up cars, flipping them over to spin the wheels, doing his Thai-Chi and other very unusual and repetitive behaviours.

I spent a fair portion of that year doing research and when Cameron turned 2, I asked our family doctor for an assessment.

He told me that Cameron was a bright boy, that he was likely just going to be a late talker and recommended we just wait.

We respected his opinion but insisted anyhow… 6 months later, I was in Toronto with Cameron, visiting a hospital.

Cameron in the news

Cameron in the news

During Cameron’s assessment, Cameron shocked me. Almost even worried me…. he spoke!

The doctor took out a little bottle, a little wand and filled the room with bubbles. To my complete and total surprise, Cameron said “bubbles!”

To be perfectly honest, and the reason I say it worried me, was that this.. of all times, would be when he speaks. That these people would look at me like a neurotic parent that was just wasting their time or worse, making things up. See, I had told them that Cameron can’t speak. He just proved me wrong… right in front of them.

How embarrassing! Wonderful… but embarrassing.

It turns out that I didn’t have anything to worry about because they diagnosed him with PDD-NOS, on the Autism Spectrum. One word certainly isn’t enough to fool a doctor out of a diagnosis… I know that now, I didn’t then.

Fast forward a bit

I’ve written previously about the 3 year wait lists we were put on, the $150/hour speech therapy appointments… how my wife took it upon herself to learn the treatments and therapies so she could do it at home…  I’ve even written several times about how we gave up our house, everything we had and moved pretty far in order to get Cameron into a special school where he could excel rather than regress… so I won’t repeat it.

I will, however, tell you about something amazing.

When Cameron was diagnosed, despite having said one word… they told me that it’s entirely possible he might never have “normal speech” and even if he does, it’s even more likely that he’ll never be very good at social interaction and communication.

We were told not to be too disappointed or hard on him if he just can’t grasp toilet training.

Essentially, we were told not to expect the worst but to be prepared for it. Cameron may never progress, he may progress and then regress… anything was possible.

Cameron proved them wrong. Not us, Cameron did.

Truly inspirational

Cameron iPad

Reading Cat in the Hat

I will never deny that my wife and I have done a lot to get where we are.. we’ve never given up and always tried our hardest. But the truth is that the real person responsible for where Cameron is today is Cameron.

At 6 years old, Cameron is reading Cat in the Hat books himself, he has friends, he’s doing well at school, he can ride a bike now (for the most part), he can finish video games, he speaks in complete sentences (he even says “You and I” instead of “me and you”!!)… he’s doing exceptionally well.

That’s not to say that he doesn’t still have his issues… his senses are still very sensitive, he still needs his specific diet, he still gets overwhelmed quickly and needs quiet time… you get the idea.

I try my best to support people, give them positivity and even inspire people as best I can but the honest truth is that the real inspiration is Cameron.

It’s just simply amazing to think of how well he’s doing despite all of the things I was told almost 4 years ago. He’s overcoming obstacles, he’s smashing through barriers. He’s never giving up.

I don’t just say that as a proud parent.. if you ever get to meet Cameron, you’ll see it in him.

Never Giving Up

As soon as I could have actual conversations with him… I would ask Cameron “What do you do when you fall down?” and his very simple answer was “get up”.

I asked him that at least 2 or 3 times a week, for over two years now. Half the time he answers on auto pilot (without thinking about it), the other half he is always happy to answer because I always praise him so much for being right.

He didn’t learn that from me. I learned it from him. All I ever do is remind him.

Cameron didn’t learn to ride his bike until he was 5… he started learning when he was 3. It took a long time but he never gave up. Cameron had a very hard time playing any sort of video game due to poor motor control but a year later, he could win most races at Mario Kart Wii.

Reading, writing, math, puzzles… it never mattered what it was, he would do it every day, on his own, never willing to give it up.

It was really quite easy for my wife to sit him down to learn the alphabet or numbers or how to do tasks because he was always eager to learn them and no matter how hard it was, he was always eager to keep doing it over and over.

And if there is something he can’t do, if a bad guy in a game can beat him… he gets mad. Not meltdown mad… just… mad. When that happens, there is no turning off the game, there is no doing anything else. It drives him.

No matter how inspiring people can be, no matter how much wisdom they have to share with me… no one inspires me as much as Cameron does.

My hope is that one day he’ll be able to look back on this blog and anything else I do and realize how much he has done for me. I’m so very proud of him.

Cameron - 6 Years Old

Cameron - 6 Years Old

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He’s my son

By on November 29, 2010 in Autism

One of my two year old twins, Logan, has autism, SPD, very significant food allergies, and seizures. The twin brother, Colton, does not. It has been interesting to me, in the nine months since Logan’s diagnosis, the various things people have said in response to that. A neighbor come into my home once and told me, “Oh, what a shame that Logan is that way. But what a comfort it must be that you were able to have one twin that’s not got problems. At least you have Colton and the other kids.” At the time, I was so angry, I invited this neighbor to leave and never come back. But that incident provoked a whole thought process in my brain which turned out to be a good thing!

Yes, Logan has autism. Logan has sensory issues. Logan has food allergies that are so significant that they can ( and have) cause anaphylactic shock. He is the only two year old I know that has a twinject prescription that has unlimited refills. But even with all that, more importantly, he is my son.

I do not love Logan any less than I love Colton or my five other children simply because he has autism and other issues. I do not love Colton more because he does NOT have learning delays, or allergies. While I do have to do things differently for Logan because of his special needs, it does not change the fact that he’s my son.

When I write about Logan on our blog, or introduce him to someone, I do not say, “ This is Logan, he has autism.”. I say, “This is my son, Logan.” You see, that thought process which my neighbor provoked, inspired me to search within myself and come to some carved in stone realizations.

Autism does not define my son. Autism is not the sum of his existence. What autism has done for our family, however, is taught us to sit back and enjoy the little things. Milestones that my other children hurdled as a matter of course, are now something we celebrate. Not because Logan has autism, but because Logan has mastered something new after days, weeks, sometimes months of practice and struggle, without every giving up. We have learned that a victory is a victory, no matter where you are in life.
Logan is not “that way”. Logan is Logan, and that’s all he will ever be. Just as I am me, and you are you. It’s as simple as that. Yes, Logan has therapy to help him. So what? I have spell check to help me, because I have fingers that like to type before I finish a thought. Both therapy and spell check are tools. Everyone has different ones, for different reasons, and it makes you no less of a person, by using them.
Loving your child is all encompassing. Whether the child walks or talks or grows up to be President of the United States, he/she will ALWAYS be your child, and you will always be your child’s parent.

Now, when someone “consoles” me because I have Logan, I simply say, “Why are you consoling me? Logan is a gift. He’s my son.”

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The boy who couldn’t say “good-bye”

By on October 7, 2010 in Autism

People tend to have a lot of questions about “feelings” when the topic of Autism comes up, the most obvious topics covered are the temper tantrums, the lack of eye contact and the refusal to hug or show love.

The questions range from the simple “why” to the more absurd “do they even feel love?”

Cameron is a very special boy who’s overcoming the odds, going from mild-severe Autism to… well, many people question if he was ever Autistic in the first place. However, he still is extremely reluctant to hug anyone, kisses are even more rare, temper tantrums still get the best of him…  in short, he still has Autism. But he’s doing so well.

One thing that has remained constant and I suspect always will for the rest of his days, is that he absolutely refuses to say “good-bye” to someone when it’s someone he loves and someone he knows he won’t see again for a while.

If he knows he might see you in a day or two, or if you’re just some random person, he might say it… more than likely you’ll get a “thank you” or a quick “bye!” to get him out of there.

But if you’re someone he knows, someone he cares about… there’s a very good chance that he won’t even want to be in the same room with you. And it’s not because he’s mad, or sad, or scared. And it’s not because he doesn’t feel it.

It’s because it hurts too much. It’s because he feels it all too well, on a scale you and I will likely never even imagine. He doesn’t say “good-bye” because he can’t say “good-bye”.

I have yet to hear him say it to someone and mean it… to someone he cares about. I doubt I ever will.

Do they feel love even thought they don’t hug you, or kiss you, or look you in the eye? In my opinion, if you were to put the amount of love Cameron feels into a scale and the amount of love you feel into a scale… an observer would be more inclined to ask you that question instead of him.

And you know what? Those that know Cameron, they get it. And they know they’ll never hear him say “good-bye” and they are just fine with it.

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Those Far and Few Between “Perfect Moments”

By on July 12, 2010 in Autism

Cameron and his little brother Tyler share a room which often means staying up well passed their bedtime talking, giggling, playing… for the most part, I don’t mind so much because it’s the most well behaved co-operative play they have all day. But eventually it gets too late and I separate them, putting one child in my bed and the other stays in their room.

Tonight, however, Cameron told me that he wanted me to stay in the room with him because he didn’t want to be alone. He said he wasn’t scared, he just didn’t want to be alone. This was the first time that he said that and while I am a firm believer in being there for him as much as I can, I also don’t want to start anything that might become a ‘habit’ or a ‘need’ in the future.

So I tucked him in, said goodnight and headed back to the living room for a quiet evening, watching a movie with Natalie (my wife).

About half way through the movie, I heard Cameron call out to me and so I went to check on him. He was on the floor, rolled up in his blanket with his head on his pillow, asking me to stay with him. This time, I did.

I laid down next to him, on my side with my arm under my head for support and my other arm down on the floor in front of me. Cameron laid down as well and kinda snuggled up to me a bit like how he does when someone asks him for a hug. He just sort of leans into you.

After a few minutes, I thought maybe my slow breathing and motionless sleep simulation might help him get to sleep but it turns out that he was thinking the same thing. He leaned back, looked at me (not being able to tell that I could see him because it was so dark) and then he nestled in closer to me with his face directly under my nose and his hand on top of my hand. He must have felt every breath I took and for him to put his hand on mine was… well, it was perfect.

So again, I laid there for a bit until eventually he kind of rolled onto his back and I started to get up to return to my wife who was waiting ever so patiently with the movie on pause all this time… and as I got to my knees, he opened his eyes and looked at me.

I put my hand on his head and said “Good night buddy, I love you” and he, still looking directly at me, said “I love you daddy” and then curled up and fell asleep.

Even if your child or children don’t have Autism, those moments are still pretty amazing but if you do have a child or children with Autism, you know just how truly extraordinary it is. For most, it’s extremely rare and for many, those moments never do happen.

I am a lucky one, they’re rare, but when they do happen, they’re perfect.

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The Hardest Thing My Son Has To Do is Love

By on May 17, 2010 in Autism

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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