Wednesday, June 08, 2011

Owen ii

Here is the original Owen post if you have not already read it:

Having children brings its own form of anxiety. Even having children who are 'normal' creates daily anxieties. I liken it to having your heart pulled out to walk around in the world. Times three. Every good parent wants the best for their child. Every good parent wants to think that their child is going to get along well in the world, and every good parent wants to protect them from all the bad crap that can happen.

When Jenn sent me the link for an article here, I was already formulating a post about anxiety, and how those normal parental anxieties are elevated for parents of children with special needs.

I nearly cried after this article. It is about children with rare genetic disorders finding others in the world who have that disorder, and seeing mirror images of their own children, right down to the physiology. It is long, but please read it if you can find the time.

Pulitzer article.

What anxieties? Specifically, this September, Owen goes to school, and we have identified three things that bother us the most about this.

First, he doesn't poop in a toilet. This can have social implications. I don't want those kids to treat him like a freak because he still has to use underjams, or a specific toileting schedule. Second, he doesn't eat 'normal' foods. He's not just picky, he's SUPER picky, and requires supplements and this seems one more step to take him out of the nutritional 'environment' Jenn has created to get everything in. He's still hovering near 33 lbs, and we'd like to keep him there and even gain a bit. Third, he tends to melt down when he overheats. At home, I experimented a few months ago and took a bag of frozen peas to the back of his neck which reset his meltdown in its tracks. I don't want this to be another thing that singles him out in school.

Cole, our 9 year old, getting a Terrific Kid award.
I have no doubt that he is going to ace his math and spelling. He really is brilliant, but he's going to have difficulties with his planning and task completion. I know the school will be understanding, and that his big brother will stick up for him, but having had such a horrible experience in elementary school myself, I worry that he won't play well with other kids. It's hard enough being 'normal' and going to school, without having to constantly explain why you're 'different'. Different in elementary school, we all remember, is social leprosy.

That said, now understand us when you get to the point in the article where the parents found other children with the same deletion, duplication or anomaly, and we were told that Owen is the only one. No group of other parents going through the same thing. No other kids to compare results, or to see how they did when they were older.

He's unique.

I have hope that what he has is the same thing I had as a child. I was hyperlexic in school, odd socially (sometimes I still am), and was defensive about loud noises and such, but not to the same extent as Owen. Now, I'm not looking for someone to tell me it's going to be okay, or that 'he's fine' ... I've given that hope up long ago for a kind of realism that informs me on what obstacles he has to overcome and what therapies help him overcome them.

I'm still left with so many larger questions though. What if it's fatal at 10 years old? What if it leads to degenerative nerve damage? We don't know. What I'm hoping for is that I have the same genetic oddity. That way, it sets my mind at ease about what the future holds for him. Barring that, I'm hoping someone in the world is in the same boat. Even if it's not me.

Now, I'm not a helicopter parent, but the urge is definitely there to be one. I sometimes can over-manage them, but I know kids have to be kids, to play and be free to learn in their own way, even if the lesson is that concrete is hard on the nose when they fall off their bikes. I sometimes have to remember back to my childhood when we used to ride our bikes nearly a three hour ride away to my grandparents cottage, or how we used to disappear all day to build forts. It was more free then. If anyone had asked my Mom where we were, she'd probably shrug and say "I don't know. Out." Perhaps it's the media, and perhaps our own fears, looking back at how much could have happened to us. It's just different.

As a result, our house is usually pretty chaotic, and we aim to guide our children rather than molding them. This therapy with Owen requires managing him, and teaching him how to stay on task, managing all the food that goes in his system (which Jennifer does magnificently) and even keeping a poop journal (I'm reluctant to call it a 'log' for obvious reasons). I try not to let the everyday coping with it consume our lives, which it has a tendancy to do. We still have to remember to be a couple, and to trust my parents to watch them for a couple of days, or even a night, once in a while, even though it isn't the care we'd be giving.

Then, there's the anxiety of the testing. We are heading down to Sick Kids tomorrow to have genetic testing done on Jenn and I. As much as we've been joking about whether this is going to be called 'Sprung's disease' or 'Wager's disease', it is possible that it didn't come from either of us. We'll find out in about two months whether the mutation was new to Owen, was from Jenn, from myself, or from both sides of the family.

(Place your bets now!!!)

But seriously, we're not looking for THE ANSWER any more. What we're really hoping for is another step toward the truth. Is the triplification on his gene passed down? Is it new in him? What could cause it? Is the genetic oddity causing all the medical things we've seen? If not, then what is? How do we make his life better?

I think Tena, our occupational therapist was correct when she said that the goal isn't so much to find out why, but to find out how to help him. At this point, I'd be happy with knowing how to help him use the toilet, and how to prepare him for school. It seems so far away, and yet we have to be ready by September.

My fingers are cramped from being crossed so long.

Owen iii
Owen iv

 My wife, Jennifer's, blog can be found here:
Cleverly Disguised as Cake

And my first novel, squeakyclean, here:
eBook, pdf, mobi, epub, rtf, lrf, palm, txt
Kindle US
Kindle UK
Kindle Germany


  1. Brilliant. You guys are awesome parents! Beautiful photos too... Perfectly placed! LOL! Wishing you all the best and looking forward to hearing more :)

  2. You are both so lucky to have each other through all of this, and Owen is very lucky to have such strong advocates for him! Good luck with the testing, I'll be thinking of you :) Laura

  3. Very moving post Jon! You both are truly inspiring! Owen is fortunate to have parents who have the patience, fortitude, and love to leave no stone unturned as you search for answers. Positive vibes coming your way for the testing.