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Raising a boy with multiple severe disabilities

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Category: medical

Sick Kids

March Break

March 12, 2008

Very brief photo journal of the past 3 days. To be continued.

Posted in baclofen pump issues, medical | 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

difficult times…

January 22, 2008

In recent days, Owen’s spasticity has been through the roof. He’s so tight and reflexive, his joints look like they are dislocated (especially shoulders and wrists). As I type this, I can hear his wheelchair creaking from the strain of … Continue reading →

Posted in baclofen pump issues, medical | Replies: 1

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Newer posts →

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

  • The best of intentions
  • What I mean by Hope as Snake-oil (3 of 3)
  • Book signing
  • What I mean by Cheerful Pretend (2 of 3)
  • What I mean by Fake Work (1 of 3)
  • 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