My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.

Friday, June 7, 2013


Today I got a phone call from the Guidance Officer at Eva's school.  She explained to me that she looks after the children with disabilities and also any funding for kids with additional needs.  I naturally assumed she'd want to discuss Eva's teacher aide hours and get me to fill in some forms for securing funding.  But no.  She told me that she'd spoken to Eva's class teacher and Eva's Special Ed teacher about Eva. Hmmm ... My internal radar pricked up. She then asked me where Eva would be going to school next year.  Huh?! Eva is actually currently enrolled at the school and in my mind of course would be staying there.
I think any parent who heard that their child's teacher had been spoken to and was now being asked where they were planning to go to school the following year would surely be immediately concerned that their child had done something wrong or was in great trouble and not so subtly being asked to leave.
I responded that Eva was currently enrolled and happy at the school she was at. Her reply was that Eva's high needs meant that I may like to consider a Special School for her and was that something she could help with.  My reply, too lengthy to include here gave her the answer she needed.  A definite no. But the damage of subtle discrimination is done. I have become so used to this over the last few years that these kind of insults just make me a bit cranky. But what about other parents for whom this is a new kind of experience and get sidelined by these kinds of comments.  I know I can't make everything ok for everybody but it irks me so much that parents who work so hard to get their child into a mainstream school have to constantly be reminded that theirs is not a position of surety.
The Guidance Officer could have just as easily rung and said "I'm finalising enrolments for next year and wondering whether Eva will be attending Grade One?"
Simple. Effective.