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.


Tuesday, August 26, 2014

School .

This is one subject I could talk endlessly about and bore most people to tears.  I have found school the most challenging thing since our diagnosis of Rett syndrome.  How's that! Dealing with all that Rett throws up and still it's the education of Eva that confounds/irritates/offends/frustrates me the most.  Despite all the patience I've acquired thanks to those years of waiting in hospitals and therapy waiting rooms...

Sending a child to a mainstream school who is in a wheelchair, who can't use her hands, can't vocalise more than baby-sounding sounds for words (and very infrequently) and uses eye-gaze to communicate is nothing short of tricky.  We "assessed" a few schools and felt the full force of back-handed discrimination before choosing where we ended up.  The phrase "You may find you're better supported at such-and-such a school" was regular and annoying.  We finally found a school that seemed to be welcoming and inclusive.  But even now, after a great year of Prep, the challenges of being in a mainstream school sometimes feel insurmountable.

We know (in that deep solid 'only-a-parent-can' kind of know) that little miss Eva is a smart cookie.  But we also get solid proof - just not as often or as easily as her teachers might like.  She loves maths and can eye-gaze the answers to sums super fast.  But only when it's 1 minute after the bell has rung and she's been threatened that there'll be no playtime until she answers. Then she does it.  So that's her attitude and I get that.  But why does she keep doing it?  Even when we've asked her not to?  She answers incrediby challenging questions that her speeth therapist throws at her and doesn't have to be bribed or bullied to do it.  I can only surmise that Eva doesn't believe that her educators really and truly believe she is smart so she gets bored and will only work when she has to.

I think that she isn't extended enough at school and have mentioned it a few times but every time I do I get the faint feeling that I'm being an annoying helicopter parent.  Eva also loves to read and will read and answer comprehension questions to about 80% accuracy.  I've asked for her to go up a reading level but am told she needs to answer the inferential question to 100% before that can happen.  Some books she does, some books she doesn't.  It makes me wonder whether there are options for her to change her mind if she chooses the wrong answer to begin with.  So many aspects of her abilities can potentially be hindered by her communication partner.  I feel like she's being held back... but why.

The school is stretched for staff and I'm sure does their best to give her the time she needs when she needs it whilst still looking after all the other kids that need help.  I wish that there was a way I could download all I know that Eva knows into their brains so they stop trying to make her prove what she knows over and over again.

With all the frustrations I experience (and that Eva definitely experiences) there is the beautiful redeeming shining light that is the interaction and friendship she's developing with her classmates.  She recently had a birthday and this little card turned up on her desk from one of her friends.  Makes all the shitty serious stuff seem doable when I read treasures like this.