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.

Thursday, February 28, 2013


There have been stages in Eva's life that she's been extremely chatty.  I don't mean using words or making any sense to me, but that she makes noises that have the intonation of normal conversation and she looks at me as though I should be understanding what she's saying.  Clearly in her mind she's trying her best to chat.  
When she was a baby this chattiness was most prevalent at night.  We'd hear her at around 2am most mornings happily talking away to herself in the dark.  When I mentioned this to her doctor she suggested that the dark and quiet environment lent itself to Eva being able to concentrate on making sounds.  But over the recent summer holidays Eva seemed to become a bit quieter.  Or was it me?  I find it hard keeping up a stream of chat with Eva when she doesn't talk back and it's easy to fall into being very much in my brain - replying to emails, pre-empting discussions or just mindless list-making of things to do.  I'm sure she gets bored by me and I sometimes fail to notice that I'm not talking out loud.  But starting school has pulled Eva into a world of non-stop chatter from her peers and it's clearly doing her the world of good.  The other day as I was asking about school I mentioned a particular little boy I'd seen talking to her.  It set her off on probably the longest chat I've ever heard in daylight!  I can't possibly imagine what she was telling me but it clearly entertained her. As does he!

Thursday, February 21, 2013

Warms the cockles

This morning when I brought Eva into class there was a cacophony of little voices saying "Eva!" "Eva's here!" and about 5 girls ran up and helped me walk her over to her chair on the floor ready for the morning class.  They almost trampled each other trying to sit next to her and were holding Eva's hands, helping her glasses stay on and generally fussing over her. She had the loveliest smile on her face but I'm sure I had an even bigger one.  
It's so heart-warming to see her loved  and cared-for by her classmates. It was such a fear of mine, when I first enrolled her in a mainstream kindy and school, that she would get teased or stared at or just not have any friends.  The absolute opposite is true.
And we seem to be making progress with Eva's special-ed teacher and have a meeting scheduled for this afternoon to talk about everything.

Sunday, February 17, 2013

nits, notes and no-shows.

School has been... well...interesting thus far.
I truly felt like the mum of a regular little school-kid last week when I discovered nits in Eva's hair for the first time. And I freaked.  I had to ring my sister and text friends for tips on how to get rid of them since she's never had them before and I had no idea what to do.  An afternoon with my sis, a bottle of Hedrin and an hour (at least) of combing later and we have completed stage one of what I now realise will be a long and highly-repeatable road!
The actual school stuff though - going, learning and being - is a LOT harder.  I wish I could fix that with a fine-tooth comb.  Eva is in a mainstream school that has a special education unit in it.  It means that there are trained special-ed teachers around to offer advice and assistance to class teachers on how to adapt curriculum etc but also a space for Eva to go to for physio or speech therapy or a place to just chill-out if she needs. But it's a pretty dowdy space.  It looks like it's not had much love or energy for a long time and the teachers seem to be perpetually running from one end of school to the other to assist students.  Clearly they are understaffed but perhaps the lack of cohesion in their workroom is leading to chaos elsewhere. Who knows.
For our little part of the school, Eva has one special-ed teacher who goes between the four Prep classes to assist the students with disabilities that range from mild speech delay to autism to cerebral palsy. She's new and youngish and when she suggested I come in for a half day so she could observe me with Eva and ask questions I was pretty impressed. However in my first hour in there she sat and helped another child, stared into space, ran through the next months worth of curriculum to a boy who clearly needed help just writing an 'a' then ran off to another classroom.  I was about to lose all hope until a new teacher arrived who sat me down and asked me all the questions I assumed the special-ed teacher would have. It was great to hear her ask the kinds of questions that will help them work with Eva and understand her physical limitations and also her ability to learn. Except that I then found out she is a volunteer and will only work one day a week with Eva.
Waste of my time?  Maybe... the information I shared will get passed on but it's the special-ed teacher who needs to hear it and understand it.
So I decided to arrange an appointment with her and Eva's class teacher so we could all be on the same page. It was the morning after the nit-showdown and we were in a frenzy to get out of the door in time for the meeting scheduled at 8.15am.  On our way there we found out that the she had called in sick just 5 minutes prior. Eva's class teacher met with us alone and we don't have much to fault with her. She is adept at including Eva and using the yes/no card, she treats Eva like all the other kids while making concessions for her inability to raise her hand or talk. But she naturally does need help from the special-ed teacher with the intricacies of using the communication book we made for Eva and adapting questions and curriculum to suit Eva's communication abilities. 
I've also tried to instigate a diary that goes back and forth between school (the spcial-ed teacher) and home with just three points per day on what has been done in class. This is so I can ask Eva about what she's done during the day without having to ask a million questions before I hit on what's actually been done. I don't have the option of asking 'what have you done today darling' and getting an answer. And sure, most kids probably say "nothing" even when they can talk, but still...  At first, notes were left on Eva's health and happiness throughout the day which although lovely wasn't the point of the diary. When I asked again for some notes on the day I was met with some resistance as 'there wouldn't be time to do that every day'. When I pursued it as just a couple of easy dot-point notes I instead got paragraphs that were written over the following few days spaces. Again, not what I asked for. I've been so clear and direct I'm wondering where I've gone wrong!
I've been trying to be objective and understanding about how the special-ed teacher might be coping at a new school with 8 kids under her wing and a busy schedule. I've been restrained in my conversations with her and with the school because I don't want to be a nuisance parent. But we are about to head into week four and she still knows so little about Eva.  It's not so much that Eva is missing out on learning but more that a major aspect of school - interaction with her peers - is being severely stifled by lack of interest in how she communicates.  
* postscript - we've since met with Eva's special-ed teacher and we had a thorough conversation about Eva and about how Rett affects her as well.  And it seems as though she's been doing her own research which is actually really lovely to see.  It's such a rare syndrome and it's great to know she's willing to learn about it.  There's a long road ahead for all of us and it's making me feel much calmer now that she's on the same page as us. Maybe she always was and it was just me feeling overwhelmed by school...  That of course is always a possibility but regardless if it benefits Eva then it's win win.

Sunday, February 10, 2013

Diagnosis day

Today we spent a fabulous day swimming, surfing, sunning, eating and drinking with friends as a pre-birthday treat and I couldn't have felt more relaxed.  This evening as we were driving home tired and a little bit sunburnt I was looking out the window of the car and saw the inky sky dotted with stars to my left and a smoky turquoise to my right where the sun had set.  The road ahead was fringed with dark trees and intermittent car lights and my mind started to drift.  All of a sudden it hit me.  Today is the tenth of February.  Today is the third anniversary of diagnosis day. I'm amazed that I've already gotten to the point of forgetting it.  Kind of.
This time 3 years ago I was in the middle of a lush morning on my own (another pre-birthday treat) and had just sat down to a coffee and lamington (an Australian sponge cake covered in a thin chocolate sauce and coconut) when my phone rang.  It was the geneticist. She got straight to the point that Eva's blood test (6 months prior) showed that she definitely had Rett syndrome.  We started having an intense conversation about genes and codes and the meaning of it all while the gallery I was in buzzed around me and I just had to get out.  I remember running outside leaving everything behind me and standing in a garden, sheltering from a burning morning sun with tears streaming down my face as I talked to the Geneticist about what we had feared for some time.  The rest of the day was a daze. I picked up Eva's dad from work and drove to a quiet street to tell him.  He couldn't face going back to work. I remember we cried a bit and talked a lot. We felt some mild relief at knowing that there was finally a reason and a name for what was happening to Eva. And there was an awful lot of fear that started welling up too. I remember thinking that I ought to be crying and wailing more but was far too dazed to do so.  I remember feeling like I wanted to hold on to this day and not tell anyone about it, as though doing so would make it far too real and shatter all their hopes as well as mine.
The last three years have been, to say the least, an education of significant proportions.  And diagnosis-day marks a specific time when the hopes I'd had for Eva to suddenly and miraculously find her way back into normal childhood ceased forever.
I like that the significance of the day is losing it's hold over me though.  I like that I have thought about this day coming but completely forgot about it for most of today.  I like that Eva, when I turned and looked at her asleep in the back of the car tonight is just, quite simply, Eva to us.