Spring 2013 (Vol. 18, No. 1)

Contents|pdfs

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Self-Determination:  An Overview
by Julie Maier
CDBS Educational Specialist

A toddler chooses his favorite flavor out of the Popsicle box. A first grader gets mad when another student takes his ball on the playground and then decides to go ask him to return it. A fifth grade girl writes out a plan for completing an upcoming history project including trips to the library for research and an art store for supplies. A high school freshman explains to his parents and counselor his core academic and elective class choices for the following year. A high school junior meets with her counselor and a favorite instructor to identify internship opportunities for the upcoming summer.

What does each of these examples have in common? In each scenario, the individual is demonstrating self-determination skills.  Making choices or simple decisions, solving problems or conflicts, and setting daily plans or more long-term goals are all evidence of this important developmental characteristic.  Self-determination is a highly valued and important factor in the development of youth in our society, yet the opportunities to develop this skill are often not made available for students with combined sensory and intellectual disabilities . Why is that the case?  Why aren’t these skills encouraged, taught and reinforced? Who determines if these skills are meaningful and relevant in an individual’s life? Are we presuming these skills cannot be learned or are not necessary because these individuals have other people supporting them who can more easily and “expertly” make the choices and decisions, solve the problems, and determine individual goals and progress toward meeting them?

.... (Please open the link above for the complete article.)

   “Why are children with CHARGE syndrome so lazy?”
Reflections on caution, self-preservation, adaptive abilities, function, efficient use of energy, and self-awareness, and the way that these can be misinterpreted 
  by David Brown
CDBS Educational Specialist

Children with CHARGE syndrome frequently seem to be uniquely driven and goal-oriented, full of energy, curious, narrowly focussed and insistent on getting what they want, and unwilling to compromise. These characteristics can be observed even in infants who have not yet acquired any independent mobility, as well as in older children. Even though children with CHARGE can be lazy, the way all of us can be at times, “lazy” is just about the last word I would use in any description of them, so it surprises me how often I hear the word “lazy” used when people talk about them. The word usually crops up in connection with the fact that a child is not yet walking independently even though it looks as if they could, or sometimes because they often like to stretch themselves out in the horizontal position, or they rest the side of their head on the table for periods of time. The word “lazy” is almost the most commonly used adjective for children with CHARGE (“naughty” seems to be the most popular, but then it would be, wouldn’t it?) yet in my experience the children are almost all determined to get up and go when the time is right, to such an extent that I don’t understand why they are not much more lazy than they actually seem to be. How many parents have felt as if their child with CHARGE was never ever going to walk, then one day at the age of three or five or eight the child has just, apparently quite suddenly, launched themselves into space and become a walker? Readiness is all!

.... (Please open the link above for the complete article.)

Valerie's Personal Passport:  Enhancing Self-determination

by Myrna Medina
CDBS Family Specialist

Valerie is an engaging three-year-old we first met when she was two.  Valerie's mother developed this “personal passport” for use in her daughter’s school and has generously agreed to share it here.  She wanted the school staff to familiarize themselves with Valerie’s likes, dislikes, and her various modes of communication as a means of embracing and supporting Valerie for who she is.  We think Valerie’s mom succeeded and she reminds us of how effective a passport can be.

To learn more about personal passports, please read or revisit David Brown’s Fall 2004 article Knowing the Child – Personal Passports.

(Please open the link in the title above for Valerie's passport.)