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.

Sunday, February 1, 2015

the edge

There's this phrase in yoga about 'coming to your edge'.  You come to a point where you can feel the stretch, maybe even feel a bit of a burn but it's not causing you any pain and you can make the decision to go further or back off depending on how you're feeling.  Anyway, I came to my edge this week and possibly pulled a muscle. Figuratively.
Eva started a new school, a new year (Grade 2) and I was with her every day in the first week helping her aides get to know her and to help out if anything needed sorting.  The first day was probably as scary for me as it was for Eva.  I felt like a kid again - wondering if the kids in her class would like her, wondering if she'd make friends, be ok at lunchtime, hoping she would look up, smile and participate. It was excruciating.  I'm so glad I'm not a kid anymore!

The first two days of school were so so hard.  I found myself getting frustrated with Eva for flopping forward, disengaging, ignoring and just not participating in any way.  She has been so amazingly engaged and upright all summer that I just couldn't believe what I was seeing! I assumed it was shyness or problems with her wheelchair straps.  Then we'd get home from school and she'd sit up straight in her chair at home and chat away to me using eye gaze and verbal responses.  I was stumped to begin with. At the start of her second day I said to her that if she tried really hard we would have some chocolate cake for afternoon tea.  But her second day was a disaster - she looked at anywhere except at her whiteboard, she refused to answer questions, she flopped in her chair and ignored the girls in her class who were trying to befriend her.  My patience was worn thin at the end of the day - I was thoroughly sick of asking her to sit up, asking her to please listen and answer a question and asking her to please look at the person who was talking to her.  I felt like shipping her off to a boarding school I was so annoyed! So when we got home I asked her "do you think you tried hard at school toady?" and she looked at "no".  I said "So do you think you deserve some chocolate cake?" And Eva looked at "no" on her whiteboard, then she smiled this smug smile at me and looked at "maybe".  I could have throttled her!  I am not just dealing with a child with Rett syndrome, I am dealing with an annoying typical 7 year old!

All this time I've been giving her the benefit of the doubt; assuming she was tired/in pain/ shy/ overwhelmed/ scared/ frustrated etc when really she's just been playing me like a well-worn fiddle. So that was when I realised that the girl I saw through the lens of Rett syndrome was also a typical kid who would do anything to not have to be at school and work hard.
And so I became the parent I guess I might have always been - I ranted at her. I told her that she was being lazy and that she was lucky to have such a lovely school to go to.  I told her that if she didn't try harder that the school might write and tell me she doesn't belong there and that would be her fault for not trying.  I was relentless and probably a little bit over the top.  But she listened.  And on Thursday she was nothing short of amazing - sat upright, smiled, was attentive and engaged, friendly and listened during class.  I was so impressed. And really happy that she was giving her new friends a chance and showing the new school who she really was.  I was also giving myself a bit of a pat on the back for figuring it all out.
But that was premature because on Friday she fell back into being floppy and disengaged.
I don't know whether I should put on my typical 7 year old hat or my Rett hat. Was Eva tired after the mammoth effort she'd put in on Thursday and was basically mitochondrially deficient (is that a real thing?) or was she being lazy again?  I have no idea.

And that there is the conundrum of having a typical yet totally un-typical child.  I can't get answers easily, I have to intuit a lot of what is going on and I have to be aware that every effort she makes is potentially very hard for her.
In a way I'm really glad she's brought me to a new edge: to understanding what it's like to be the parent of a regular 7 year old. On the other hand it's just a whole lot of new hard work and if I don't pull some kind of patience muscle by the end of the week I'll be surprised.