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Raising a boy with multiple severe disabilities

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Category: equipment

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Accommodations (excerpt)

June 21, 2011

“Whatever you do don’t move north of Steeles.” Our house had grown too small and it was time to make a decision. Owen had recently acquired his first piece of large equipment – a standing frame. A huge apparatus with … Continue reading →

Posted in equipment, excerpts, family | Replies: 1
Asus computer

portable, adaptable communication

March 2, 2008

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 … Continue reading →

Posted in communication - general, equipment | Reply
Owen in the Kids Rock

new wheelchair!

February 17, 2008

Several days ago, Owen was kitted out with a demo wheelchair – the same one I discussed earlier in this blog. It’s called a Kids Rock dynamic wheelchair, and has a special spring-like action that engages when Owen becomes spastic … Continue reading →

Posted in equipment, seating, switch use, wheelchair | Replies: 1
Switches

high tech. sort of.

February 12, 2008

As I continue to contemplate Owen’s capacity for choice-making (and his communication partners’ capacities for offering choices), I have not ruled out other options for communication. In a previous post I mentioned that he was very successful when using a … Continue reading →

Posted in equipment, switch use | Reply

low tech vs. high tech

January 30, 2008

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 … Continue reading →

Posted in communication - general, equipment | Reply

‘Kids Rock’ dynamic wheelchair

January 24, 2008

Here’s the website for the wheelchair described in the previous post, in case fetching the youtube video is too slow for your connection: http://www.kidsupco.com

Posted in equipment, seating, wheelchair | Reply

back on track

January 24, 2008

It seems Owen’s increased tone was in fact due to the clonazepam withdrawal. He’s back on his previous dose (after consultation with his physician) and almost instantly, he returned to his old self. What a relief! I feel much more … Continue reading →

Posted in equipment, medical, seating, wheelchair | Replies: 1

Upcoming

- Parent Workshop at Holland Bloorview, Feb 15, 7-9 pm

- Guest on CBC Radio One's Alberta at Noon, Feb 6, 12:30 (Mountain)

- Guest on CBC Radio One's Blue Sky (Saskatchewan), Feb 6, 12:30 (Central)

- Download podcast from CBC Radio One's Ontario Today (Jan 19)

No Ordinary Boy

No Ordinary Boy is now available! Visit the website for more info and to purchase.

Things have changed

I started this blog 2 years ago in 2009, to explore communication options for my son with multiple, severe disabilities.

Sadly, Owen passed away in October 2010. He was 12.

I will be continuing to blog here as I move on to the next phase of my journey as Owen's mother - whatever that looks like.

Thank you for visiting,
- Jennifer

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Blogroll

  • a moon, worn as if it had been a shell
  • Bad Cripple
  • Bloom (Holland Bloorview blog)
  • Early Birdies
  • Fighting Monsters with Rubber Swords
  • Hammer to my World
  • Healing, Empowerment and Thriving
  • I am a broken man you can't break me
  • Single Dad Disabled Daughter
  • The Energy of X
  • The Flight of our Hummingbird
  • The Gort Family
  • Wheelchair Dancer

Recent Posts

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  • Book signing
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  • Fake work, hope as snake oil, protecting childhood – and other inspiring topics
  • CBC radio interview, short video, book signing
  • Upcoming parent workshop (free) at Holland Bloorview!
  • Christmas ramblings
  • Another time and place
Copyright Jennifer Johannesen 2012 All Rights Reserved