(May 2011)  Before you continue, you should know that Owen passed away last October.  I am leaving the original page contents up so that older posts still have some context.

Thank you for visiting…

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(July 2009)  Two and a half years later, most of what is written below is still true.  Some updates:

• The boys will be 9 and 11 in August.
• Owen is now homeschooled, with no intentions of returning to public school.  It was a very good decision as he can now enjoy life on his own terms and his own schedule.  Because he often doesn’t sleep well, he naps most mornings from about 10 until noon.  Afternoons are often spent out of the house -walks, outings, connecting with friends.
• Owen still likes dolphins!

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(Jan 2007) Where to begin? Describing Owen can be such a delight and a terrible chore. A delight – to share the essence of a boy who, without words or gestures, touches the hearts of all who encounter him. A chore – to explain, yet again, the complex medical, physical, social and developmental needs of a boy who is Deaf and has spastic quadriplegia cerebral palsy. These are the pieces which I, as his mother and primary caregiver, must dissemble, dissect, record, discuss, justify, rearrange and reassemble on an almost daily basis – for the benefit of the individual professionals involved in his care, and for the system as a whole, which comes complete with forms, categories, diagnoses, tables and charts.

So I’ll not create yet another forum in which my child is reduced to being defined by his ‘problems’. I suspect that over time, the nature and extent of his disabilities will be revealed in this blog in an appropriate context. Instead, a blurb on “Owen, aka Bubs” (the nickname from birth that stubbornly refuses to go away):

Owen is 9 years old, and lives at home with me (his mom) and his younger brother, Angus (7 years old). Their dad, Michael, lives nearby and is actively involved in their lives. Owen also has an older half-brother, Justin (12 years old) who lives with his own mother in another city.

He currently attends a special-needs public school here in Toronto, although not for much longer. My plan is to remove him from the school system entirely and develop a home-based education program that focuses on his communication and developmental needs. You can read more about that in Communication Plan.

Owen is a keen observer and, while he prefers to be included physically, where that is not possible he is often amused to watch and enjoy experiences visually. Especially if interpretation and facilitation in American Sign Language is included. Without language, Owen is unlikely to fully understand what is happening – although he may still be amused!

His favourite activity could be described as simply engaging with another person – going for a walk, reading a story, making a craft – he thrives on contact, connection, engagement, companionship. His favourite people are Angus (his brother), Indiana (one of his caregivers), and various adult family members and friends of mine. (An important goal I have for Owen is for us to create a friendship base of peers.)

As for personal preferences, here is a short list of favourite things, in no particular order: sea creatures, including dolphins, whales, seals, manatees, octopi and squid; savoury soups; dancing fruit (don’t ask); any Telus commercial (with all the white space and slow-moving critters); babies; Angus dancing to Abbey Road; swimming.

So, I said no reducing Owen to his disabilities. However, he has limitations that should be noted, especially if this blog is to make any sense. Please see Medical Background for more info.