Acceptance - or Not Archives - Page 2 of 2

My mom sent me an article about a girl in Charlotte who has a rare implication from jaundice. She was getting ready to have a surgery that would create deep brain stimulation to hopefully help control her chaotic movements and help her learn to talk. Prior to surgery, she was a lot like Catherine – but she smiles.

I read this article the same way I do a lot of articles like this one, with a panel of questions.

Is there anything I can learn that will help Catherine?
Should we do something so public to help Catherine?
Do they have the best surgeons? Should we consider going there for some procedure? Same with therapists.
And ultimately, is this kid enough like Catherine to even really matter to me?

Well, in this case, she was except for that one important point that nagged at me the whole way through the article, which got nearly two full pages in The Charlotte Observer. In photo after photo, Lexi was smiling. And the doctors and nurses and family members surrounding her were smiling. And you could tell they played off each other’s energy with that smile. In fact, the mom even talked about how the smile was what kept her going.

So what about those kids who don’t yet smile? Catherine doesn’t smile. Not really. She has a facial movement we refer to as a smile, but unless Brian is rubbing her head, she doesn’t really do it in response to a social interaction that one would normally expect to cause a smile. She doesn’t do it when she hears my voice. Nor when I hold her. Nor when I tell her how beautiful she is. Her affect is nearly always the same. When Catherine smiles, it’s usually in response to some physical sensation that must feel good to her – or be so intense that she can’t help the facial response.

And so I concluded the article with the last point that usually rattles around in my head, probably unfairly so, but this is an honest admission: Do they have it as hard as we do?

There, I said it. Well, I wrote it. And right now, no one even knows this blog exists, so no one may ever read that. Or I may open up with just that must honesty about life with a child that doesn’t smile. I think if I could have one single thing happen, I would have Catherine smile.

I don’t say that to take anything away from the struggel the Haas family faces. You can follow the story at their Caring Bridge site. Lexi really is a beautiful girl, and I wish the very best for her. Who knows, maybe they are paving the way for Lexi to talk and Catherine to smile one day.

I’ve been reading a free copy of Exceptional Parent, a magazine for the parents of special needs kids. It’s quite impressive. The articles are well researched and documented, and they provide deep looks into the lives of living with a kid with disabilities.

An article in the June, 2009 issue titled, “The Basics of How to Reveal Epilepsy” by Robert J. Mittan, PhD caught my eye. Catherine has epilepsy. We typically refer to it as a seizure disorder, but it’s the same thing – epilepsy. I’ve usually just told people she has it. Never thought about the care I should take in divulging that piece of her medical history. Never thought about the fear others might experience wondering if she’ll have a seizure in their presence. Maybe I should rethink it. Maybe not.

A paragraph early in the article really struck me:

When you talk about your epilepsy or your child’s epilepsy, never blame the other person for their misconceptions or ignorance. No one chooses to be ignorant, and we all like to take pride in our own intelligence. If you somehow suggest that the other person is ignorant, you will be insulting them and their intelligence. There is no quicker way to get them to stop listening and learning from what you have to say. All they are truly showing is their cultural training and the fact that they have not yet had the opportunity to begin thinking about epilepsy for themselves. Give them respect and room to start thinking for themselves.

This strikes me as something we should all do regardless of the situation. If we consider the cultural background of a situation rather than the “rightness” or “wrongness” of it, many things lose their stressful significance. If we just consider that someone hasn’t yet been exposed to this experience as part of their culture, we become more patient and open to explaining our views.

Brian and I have backpacked around the world. Thankfully, we opted to do this before kids, and I think it’s one of the reasons I’m able to accept our road in life – I got to do my lifelong dream already. We spent hours asking questions of people we met seeking to learn more about their culture and seeking to understand them better. And we spent hours explaining the US and how and why it works (or sometimes doesn’t, frankly) in our country. We exchanged this information in an open environment motivated by curiousity – not judgment, not fear, not justification. We just sought to understand each other’s ways a bit more.

Frankly, I would rather someone ask me questions about Catherine (most days) than just stare from afar. I hadn’t yet thought of our life as one of a different culture, but I like that imagery. We each have lives of a different culture. Maybe we can approach each other like that.

Cheers,

Ellen

Smiles

Cultural Training