Monday, February 27, 2006

I am mother, hear me ROAR

February 22, 2006

****** Avenue School

To Whom This May Concern,

In my many conversations and meetings with the Literacy Support and teaching staff at ******* school about my son, Owen ****, it occurred to me that I tend to retell the same story. I realized that we have acquired much history and information on Owen, throughout his education at ******. Some of that history I feel, needs to be put in some context. I wish that this letter be included in his personal file, so that some stories do not need my repetition.  
     In addition, I also wish to articulate my own philosophy about Owen's medical diagnosis. Professionally, I teach post-secondary courses about health and healing throughout the world. What has become clear in my research and teaching is that modes of "disease" and "disorder" are culturally constructed and negotiated. By casting a wide view at the plethora of healing and medical practices, it becomes clear that medical science is just another - and not the only one true - method of interpreting health and disease. I tend to look at material pluralistically, and try to understand how each system of healing makes sense it its particular context. I am also not the sort of person to take all the information I am given at face value.  

When Owen was about three years, I sought the advice of Dr.******** 's with regard to Owen's language delay. He suggested that some of Owen's behaviours and difficulties had autistic tendencies, but he was in a very "grey area". He recommended that we diagnose him with an Autistic spectrum disorder, in order that Owen have access to the Paediatric Rehabilitation team and continued speech and language therapy. Dr ****** did not perform a through diagnostic assessment at that time. He felt that we could get the ball rolling with government funded programs with a "real" diagnosis on paper.

     In the eighteen months following this appointment, Owen was seen by 3 paediatricians, 3 speech therapists, a psychiatrist, 3 psychologists and an occupational therapist. Much of this "variety" was due to our family relocating to *******, Ontario for 18 months. He had a host of tests and assessments, and not one was able to unequivocally determine that Owen was well within the parameters of an Autistic Spectrum Disorder. I had the opportunity to work with many caring experts, but on more than one occasion, my views and questions were dismissed and disparaged. For instance, one psychiatrist wondered whether Owen had difficulty with transitions. When my response was no, she then suggested that his behaviour in her office was indicative of the contrary. In fact he had the flu. On another occasion, with another psychologist, there was the suggestion that Owen had gross motor delays. When I questioned that finding, and recounted stories detailing Owen's remarkable tree climbing abilities, my observations were dismissed in favour of her conclusion.     

Over the years, I came to learn the meaning of "advocating for my child" the hard way.   As I negotiated the intricate quirks and hurdles of our medical system, I learned when I need to speak up and when I need to listen.  By the time Owen was four and a half, I grew more disinterested in finding a correct label for his uniqueness. Instead, I was focused in finding as many methods which would help facilitate Owen's language acquisition and learning. Prior to Owen's enrolment in Kindergarten at ****** Avenue school, I had a long discussion with his paediatrician, Dr *********. I requested that we update his medical file by revisiting the Autistic Spectrum disorder diagnosis. I felt that it no longer adequately addressed Owen's quirks, and begged others to make assumptions and unnecessary judgements about my son. Dr. Swami urged me to keep the diagnosis, for fear of Owen losing classroom support. He felt that he could get lost in the school system without offering a "red" flag. I feel that I need to stress that the diagnosis remains for support and administrative reasons, not because there was an irrefutable medical conclusion.

      I remain disinterested in labelling Owen. I feel that labels may sometimes be helpful, but often determine our behaviour towards others, both consciously and unconsciously. I feel that it is in Owen's best interest to be regarded as a whole human-being, and to not have us focus on a very marginal aspect of his behaviour and cognition. To that end, I hope that I am able to partner effectively with the school, to meet and support his academic needs. While I am aware how my experience and understanding may be viewed as unconventional, I am Owen's mother and well educated.  I need my understanding of my son's issues to be respected, as I respect Owen's teachers and support staff.

     I wish to conclude my expressing my gratitude for the dedication and hard work that I have seen from the staff at ******* School with respect to my son. I trust in the help and support that he is being given, and can see the results. I hope with a more complete picture of Owen's preschool history, we can continue this partnership.

Thank-you for your time and attention

Heather ******


Stephen (aka Q) said...

Well done, Heather. What a difficult position to be in, having to accept a label for your child that brings a lot of baggage with it, both for good and for ill.

hotboy said...

It snowed here today, Heather. The first snow of the winter on March the somethingth. We don't see it so often these days. Hope your meditations are going well and the family are all okay. Hotboy.