Talking and hearing. Two things most of us, including myself, can do without any props or devices. Which means I’m fairly portable – I can dash out the door and trust that if I need to communicate with someone about something, I can. I think about this a lot in respect to Owen. Not that [...]
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previously presented speech – ‘Emerging Communication’
Following is the speech/presentation I wrote and delivered for the Children’s Treatment Network – a new virtual therapy center for children with disabilities for York Region (the region north of Toronto). It is ‘virtual’ because there is no physical location – therapists are connected and referred by phone, email and web services. The audience was [...]
response to last post
Regarding my last post, a comment from my dad, SKJ: You are surely too hard on yourself. “Presentable” and “regular” are the loaded words, the dark suspicion that your quest for communication is some sort of misguided response to shame. It is not Owen’s humanity that is on the table, but yours, ours, all of [...]
low tech vs. high tech
Owen had his communications assessment meeting yesterday, at Bloorview Kids Rehab, and it was fascinating. It will likely take several posts to distill it all – but I’ll start with the most compelling stuff. I have been assuming all this time that independence should be the final communication goal for Owen. To be able to [...]
communication breakdown
A couple of incidents over the past couple of days that make me realize just how imperfect the idea of a ‘communication system’ is… Incident 1 Owen is fed by g-tube and especially these days gets very little to eat by mouth. He silently aspirates even on his own saliva and adding any food into [...]
initial meeting
Decision is made: time to develop a proper home-based curriculum, and withdraw Owen from school once the programming and support are in place. I’m aiming for March, but this process could take until the end of the current school year. A good first step was made – I had a long meeting with Laurel (at [...]
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Recent Comments
6th Jul 10
The word 'random' strikes me. As actual for the reality.
5th Jul 10
That's an enlightening and sobering post. I keep thinking about whether we would have done the surgeries Ben had in ...
4th Jul 10
Thanks for your comments Pamela and Claire... I frequently hear stories of patients (and parents) dissatisfied with their encounters with specialists ...
3rd Jul 10
Wow, what a difficult post. I've read it over a few times and I get it. We are, ...
3rd Jul 10
Wow. As someone also navigating the Ontario medical system (with a younger child), I really appreciate the insight of ...
4th Jun 10
awesome photos. Very excited you got away to NYC. I would have a very hard time consenting to treatment that I ...
3rd Jun 10
Hey Louise, I would certainly guess it's been done more in the US - but everything at this point is anecdotal. ...
3rd Jun 10
That's very disappointing -- especially because of the incredibly vague responses re risks and benefits. It's easy for a surgeon to ...
2nd Jun 10
"I guess that saying is applicable here: when all you have is a hammer, everything looks like a nail. ...
10th May 10
I agree! And appreciate the honesty in both of your blogs.