Compromise
March 26, 2016
Reconciling Autism
April 18, 2016

Self Advocacy

In 2010 our son Corbin was in crisis and needed to have a residential placement at the Child and Parent Resource Insititute (CPRI) in London Ontario. While he was there we were able to start the process of having him diagnosed with Bipolar disorder (on top of all his other diagnosis – Tourette’s, ADHD, OCD, Disturbance of Attachment, Autism, Sensory Integration Disorder and probably more I just can’t think of right now). His time at the residential placement ended prior to completing the assessment for Bipolar. Following his time at CPRI we transitioned him (rather poorly) to our local children’s mental health agency for ongoing services while we continued the assessment process and subsequently began trying medication to better manage his symptoms. So needless to say we asked the treatment centre for a little extra leeway as he had untreated bipolar disorder which affected him significantly throughout his day.

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From day one Corbin had trouble with the Educational Assistant Jodi in the treatment school. At one point he tried to self-advocate by telling his case manager “it’s either her or me” , referring to the EA. When that didn’t work he begged me to homeschool him. To be honest I wasn’t happy with the treatment center as they had a very punitive behviour modification bent while I was advocating for positive behavioural supports and the use of Collaborative Problem Solving (Ross Greene). I had seen these techniques work at CPRI and at home but the treatment centre refused to get on board. Finally Corbin dictated the following:

It is hard in class because I am always getting Time Outs. I get Time outs because of things I can’t always control like sometimes I quietly talk to myself and Jodi gives me a cool it card. Jodi said that I can’t talk to myself because it is disruptive. I don’t mean to be disruptive its my leaky brakes. I think I need to go back to the brake shop because maybe then Dr.Dunc could explain it to Jodi and get her to understand.

 Also I hate the cool it cards. I don’t think its fair that I get 2 yellow cards then a red card and then I am in trouble and I have to leave the class. No one else has cool it cards, why do I?

At St. Al’s if I quietly talk to myself or I’m being disruptive I just get to leave the classroom to go talk to someone or do something else for a few minutes. I don’t get in trouble for it.

I am upset I have not been using my computer in class. When I tried to tell Jodi that I have a computer and I am supposed to use it I got a time out for arguing

The school work is too easy and not what I am used to. We don’t even have textbooks. We just keep doing coins everyday. I want to do Geography and Geometry and Science

And that is being a self advocate. Unfortunately the staff at the treatment centre chose to ignore his pleas and instead argued with him about the effectiveness of their techniques. In the six months he was there we could not get them to listen to him or to put positive behavioural supports in place. We ended up taking him out of the treatment program and have been out of the children’s services for mental health ever since.   It is amazing how much healing has happened in our family without the constant advocacy we were having to do within “the system”.

Tina Szymczak
Tina Szymczak
Tina Szymczak is a 40-something mom and wife with two spirited boys. She has worked in early intervention and as an advocate resource for families with a loved one with a disability. Now she also writes a blog about raising children with complex needs, trying not to lose your sense of self as you parent, and her struggles with mental health.

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