Wednesday, March 14, 2012

From boy to boy-man

Sometimes I wish Ben had more age-typical interests. I wonder whether I should be 'pushing' him into common teen pursuits and 'discouraging' some of his favourite pasttimes.

Here's a pic of Ben at a comic book conference last week. He went with D'Arcy and had a blast. For the last three days he's been on a trip to Niagara Falls with Marjorie, Sallyanne and two other boys. They visited the falls, went to a bird sanctuary, played glow-in-the-dark bowling and golf, went on a ferris wheel, checked out the wax museum and enjoyed hotel life. A highlight at the bird kingdom was a free-flying aviary where Lorikeets landed on the boys' heads.

My boy is about to celebrate the birthday people associate with becoming a man. He will be 18. Yet he is the size of a child. And when we packed for his trip to Niagara Falls he asked if he could take his Halloween Town 2 DVD and I suggested we slip Jessie (the Toy Story character) into his bag. He wouldn't have asked to take Jessie, but I knew he'd like to find her when he opened his bag.

Unlike Ben's cousins and peers, his romantic interests at the moment centre on Jessie and other red-headed leads in Scooby Doo (Velma), The Secret World of Arietty (Arietty) and The Lorax (Audrey).

He loves to pull up Jessie's When somebody loved me song on the net and profess his love for her. And yet I hope for him that one day he will know some kind of romantic love, if that is something he desires.

Sometimes I feel the urge to censor what I write about Ben; I don't want to depict him as too child-like. Goodness, we all know how dangerous it is not to 'act your age!' There's always that social pull to 'fit in' -- whether it's about us or our kids. That's why I admire the way Making Peace With Autism author Susan Senator writes about her son Nat, a young man with autism who just moved into his own house. She writes about the whole person.

In a recent post, she notes that Nat, now 22 , is a man, who wants some kind of romantic love, or sex, albeit one who still "(sucks) his thumb, eyes wide and blue like a Disney elf." She can hold those two conflicting concepts of her son in her mind -- Nat as grown-up with adult desires and Nat who still needs to be protected, who lives in a group home. They are not mutually exclusive. Nor should they be. Aren't we all a hodge-podge of contradictions?

Susan links to a blog by Landon, a man with Asperger's, and this piece called They Don't Care How They Kill the Part of You That is Different:

They don't care how they kill the part of you that is different.
They'll train it out of you if they can.
They'll try to make you just like them
Indistinguishable from your peers
And maybe it will work.
And maybe it won't.
And if it doesn't, they'll try to get you to hide yourself away so no one has to think about you.
If you don't, they'll do it for you.
Or try to make you hate yourself so that you kill yourself...

And it made me think of how we try to change/reshape our children in the hopes of helping them to better fit in, be accepted, NOT stand apart, NOT be excluded. But at what cost? By stifling a part of their essence. By stamping out a part of them that is different but no less real, credible, valuable.

And I was glad I'd packed Jessie for the trip to Niagara Falls after all. My son's life is different -- and it always will be. But different and wonderful can coexist quite nicely in this life, if we only honour who a person is, not try to hide it.



After surgery, I will write a post on BLOOM changed my life, allowing me to help others, and giving access to one place I needed most: Holland Bloorview.

And, although I'm sitting in front of my computer, doing something I love, my mind is elsewhere: I'm in Orthotics, talking to John asking, "Where do I go for help?" "What should I do?" Or, I'm at Alexanda's funeral thinking about how I couldn't walk in a cancer relay due deteriorating condition and without a surgeon in sight to help me --it was a betrayal against my heart, worse than any disability. And, I'm even at the arcade with Ben and D'Arcy. I had just bought Ben a bunch of tokens. I can still see your see husband stuffing the tokens into his pockets, as there were so many, but I couldn't play with Ben because I no longer sit in my wheelchair and there were no other seats around.

Nobody's hinding, and I'm just starting to fight back. Please, hug Ben for me!!!


So powerfully said, Louise. I totally related. At 9, Max still likes, for instance, Thomas the Tank and even Barney on occasion. I've wondered about whether I should let him watch these programs, but I've come to the decision that if it makes him happy, it's fine.

You know, as I know, that one of the toughest things about raising a child with special needs is learning not to project your own wishes onto them. So as much as I wish for Max to have more "age-appropriate" interests, this is where he is right now.

Same as you and Ben, I wish Max will someday have love and romance. But I also wish that he will have the happiness he wants. And if he grows older and he is content without that, because that is not something he desires (as you note), I think I will be fine with that too.

Hi Ellen -- it's Matt Kamaratakis.

After momentarily reading your comment above, and watching the video which you so graciously allowed Louise to post last week, I believe that Max is bright with the to educate himself.

Therefore, I must ask, "Do you believe that Max's behavior is a result of his disability or a consequence of exclusion by his teachers and classmates?"

I also urge you to help him discover the true potential of his intellect. With this said, I too have cerebral palsy and can tell you that the basis of reading, writing and mathematics will take longer to learn, but all three can be mastered. For instance, Max is non-verbal and cannot sound out words, but he can use an online dictionary which will read the word he looks up.

I'm talking the time tell you this, using one finger to type (poor motor skills), because I have a feeling that nothing or no one will ever keep your son quiet!