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, August 24, 2012

Turning 5

It was a stressful week leading up to Eva's 5th birthday.  I'd been struck quite suddenly with the enormity of what Eva's future might be like (I tend not to think too far into the future as a means of self-protection) and also spent some time thinking about how different she is from other little girls about to turn five.  I'd also been holding on to a stupid superstition about her being four - in Japanese and Chinese the symbol for four sounds the same as the symbol for death so you will often find hotels without a 4th floor and it is regarded as a very unlucky number.  I'd gotten it into my head that it was best that Eva turn five as soon as possible!  So, with quiet relief and quite a huge amount of chocolate and presents Eva turned five.  And it turns out in so many ways she is of course just like all the other little girls turning five.  She loves Barbie and chocolate cake, she loves jewellery and music boxes and she loves the attention. Just not too much of it and not all at once.


Eva getting a simultaneous birthday kiss from her grandmothers!

Tuesday, August 21, 2012

Karly

It was a sad afternoon today as I read my email and heard that Karly had passed away.  She was a young woman in America with Rett syndrome whose blog (http://spiritdances.wordpress.com/)  I had found not long after Eva was diagnosed.  We had some email contact and she sent us her CD of music that she'd composed and we exchanged a few emails.  I followed her blog regularly and she was one of the few people with Rett syndrome (that I knew and who had a blog) who was able to communicate really well.  Her blog was a source of inspiration and information as she wrote from the heart what it was like to live, be and feel Rett syndrome and disability.  She was articulate, creative and musical and in the early days of diagnosis it was an eye-opener for me that this was Eva's potential as well.  Karly was in her late twenties when she died yesterday.
And today is the eve of Eva's 5th birthday.  With this sad reminder that Rett syndrome is life-limiting (although I don't like to dwell on this) I can't help but appreciate how precious every day with her is.
rest in peace karly.

Monday, August 20, 2012

The best we can do

Apparently, Eva is the healthiest she could be and we have done the best we could do for her.  There is nothing (health-wise) more we can do.  I should be happy.  I know that.  But quite frankly I wish there was something, anything, we could improve upon.

We have just received the results of blood tests we've had with a biomedical doctor.  He came highly recommended amongst our local Rett community and we went to see if we could find a way for Eva to stay awake longer (getting ready for school next year) have less gastrointestinal pains, reduce the possibility of seizures and just be as healthy as she possibly could without medical intervention in the form of drugs.  He ordered blood tests of all kinds - amino acids, vitamins, iron and importantly carnitine. Carnitine has been studied and used to increase endurance and stamina in girls with Rett syndrome and is used in the mainstream by body builders and athletes.  It turned out to be the most expensive test of them all and was one I was hoping would be our golden ticket to keeping our girl strong and alert for longer.  But no, it turns out she's running like a well-oiled machine and in fact her carnitine levels are slightly elevated.  Fizzle.

Most days as I kiss her goodnight I feel like I've failed her because I haven't managed to squeeze in a speech therapy session or give her a foot massage for her little curled up toes or not had time to put her in her standing frame or not read the book that would help us communicate better with each other. And the list goes on.  But today, I can go to bed knowing that if we keep up her diet, her healthy food, her gut powder and her hemp seed oil that we have done all that we can do to keep her as healthy as possible.  Will I sleep better?  I should...  But I probably won't.  Perhaps I'm the one who needs carnitine.

Saturday, August 18, 2012

Teeth done

We sat in the dentist's chair together on Thursday, Eva and I, watching Shaun the Sheep on a big screen, while I held Eva's head and arms.  Our new gentle dentist reached across and in just four short bursts managed to clean, wash, scrape and seal the fissure in Eva's back tooth. While it was relatively painless it was uncomfortable for Eva who hates having her teeth brushed at the best of times.  When it came to doing the second tooth on the other side she firmly closed her mouth shut and refused to open it.  Absolutely no way mummy.  But after the bribe of going shopping for birthday presents and telling her how brave she is she opened wide and did not flinch one bit as the second tooth was done.  Sitting her on the couch while I paid the bill she looked around at the other kids in the waiting room, grinned and started what I imagine was a little speech about how brave she was and how she's now going present shopping and going to find herself one amazing birthday present.  Of course the voice that came out sounded like gobbledigook to the kids there and they paid little attention to the little girl on the couch.  But Eva kept talking, kept grinning and when we went shopping she chose a blonde blue-eyed 'Sparkle Girl' doll in a dance dress as her present for being so brave.  And today when we finally sat down to go through the alphabet so she could tell me the name of her doll I found out that I have deprived my poor child of what she really truly wants.  She has called this very non-descript blonde doll... "Barbie"!!!

Saturday, August 11, 2012

In just seven days..

Seven days ago I was sitting with the State Premier telling him where things are wrong in the disability sector, urging him to support the National Disability Insurance Scheme and advising him of the exorbitant costs in raising a child with a disability.  You'd think a civilised nation like Australia would take care of it's most vulnerable first.. we have a long way to go (check out Every Australian Counts here).  I do like to think however that things are changing and there has definitely been more of a focus on disability and the NDIS in the news lately. 
Four days ago the issue over  Eva's "assessment" was put to rest - the school has removed it both electronically and in written form and the Principal is going to look into their policies and procedures for this.  It's the best that I could hope for.  For now.  Long term I really want to see changes in the education system for people with a disability but one step at a time...  It was absolutely amazing to see that post receive so much feedback and interest.  There was quite literally hundreds and hundreds of people all reading it at the same time.  Despite my physical distance from them (many were in America and Britain) I felt such overwhelming support and collective outrage that it was quite wonderful.

Three days ago.. a massive reminder of how amazingly generous people are.  We emailed out a call for sponsors for a fun-run we are doing to buy Eva a chair for school next year.  Overnight we had emails and calls from people wanting to join our team in the run and also an incredible number of donations and messages of support.  It doesn't matter if the support is a kind word or cash - it all counts - and is a beautiful reminder of how generous and loving people can be.
Two days ago I was in a meeting with the Department of Communities with a group I have joined called Families Matter.  We are a group of parents who all have a child with a disability; angry, concerned but ultimately hopeful that we can change how the system works and willing to volunteer our time to liase with departments to make it happen.  It's incredible to think they don't already have groups like this that they work with before they make changes to policies.

And finally one day ago I told my mother about the misfortune of being brought up with good manners.  I described to her how I often stand in front of people who, due to their profession or age, I place in high regard and deference, as my well-mannered parents taught me.  When these people are rude, discourteous or downright arrogant I have great difficulty in standing up for myself or Eva in front of them.  It's been a huge source of frustration.  So my mother took me by my shoulders, stared into my eyes and said "I absolve you from all requirements to be well-mannered toward any person who treats you or Eva badly."  Not quite a religious experience (I almost expected some smoke or lightning to appear) but hopefully it works!
This was a most unusual week...

Monday, August 6, 2012

Intellectual Impairment (in the eye of the beholder)

I studied Japanese for four years at high school, three years at university and then lived in Japan for two years. I was able to speak very well for my age group but still struggled to speak articulately to anyone older than me after 9 YEARS of study!
My daughter Eva was "assessed" without my knowledge 18 months ago and last week I was told that her report for her future schooling will show that she is Intellectually Impaired. She is not even five years old. 
She has not had education even remotely akin to what I have had in order for her to speak this foreign language called Augmentative & Alternative Communication and she has not even been given the chance. I find it reprehensible that an Education Department could even possibly presume her as Intellectually Impaired before giving her a chance to learn to communicate. But assessing her without my knowledge, without proper instruction on how girls with Rett Syndrome communicate and without giving her a chance to succeed before imposing such limiting labels on her is just downright stupid.
I'd quite like to approach them in full Japanese and when they are unable to reply, place a big sticker over them that says Intellectually Impaired and see how they feel about it.
I'm so incensed yet so tired of being incensed about things!
I just wish that people could think beyond what is an easy box to tick and think about how that might affect someone's future.  I know I've brought it up before but imagine seeing a small boy in a wheelchair, terribly disabled, unable to communicate.. imagine the labels they would impose upon him.  Now see him as a grown man, see him teaching us all about mathematics and theories of the universe through his communication aids. Had Stephen Hawking had his disabilities at age 2 not 21 I have no doubt he would not be where he is today.
I do know that some girls with Rett Syndrome have reduced intellectual capability due to seizures and other factors but I have researched enough to know that labelling every girl as intellectually disabled is the most limiting thing we could possibly do. In Eva's case she is starting to use eye-gaze successfully and answers questions in the way four-year olds do - sometimes with complete honesty and sometimes with a serious amount of cheek!
When I am in Japan, because of my fair skin and pale eyes, people speak to me in English and I respond in English. When I speak in Japanese they don't hear me, they just see my pale eyes and fair skin and cannot understand what I am saying.  This is not a lie - it happened to me almost every day I lived in Japan. Over time, I lost my ability to speak fluently in Japanese even while practicing every single day. Their misunderstanding overwhelmed my ability.
By labelling Eva as Intellectually Impaired the Education Department is labelling her as being 'foreign'.  They are limiting her to being spoken to differently, to be educated differently and for her entire school life to be different.  It's simply not fair.  And to think... there is not even an assessment criteria anywhere in Australia for children who are unable to communicate verbally or sign or point.  How on earth do they think they will test her until they have that assessment criteria?  But the most damning aspect of this all is that no able-bodied child would be intellectually assessed until they are at school and certainly not without the full understanding and compliance of the parents.
My knowledge of Japanese swear-words is coming back with a vengeance...

Wednesday, August 1, 2012

Dental dilemma (the importance of second opinions)

So I had a lovely break away and the day after I got home had to take Eva to the dentist.  It all started about 8 months ago when I saw what I thought to be a dark spot on her back tooth and took her to see a dentist who was known to be lovely. And she was. She was friendly and efficient but her efficiency with Eva's teeth left me a little non-plussed. She managed about a 3 second view and concluded that Eva definitely had decay and needed to see a Paediatric dentist to be put under a General Anaesthetic and have her cavities filled. After my own childhood spent in dentists chairs and still needing a local anaesthetic just to get me to ring one I promptly stuck my head in the sand, lost the referral and began brushing Eva's teeth vigorously. 
Until a few weeks ago when the dark spot wouldn't seem to go, Eva started dribbling a lot more and seemed unable to handle cold drinks. Ahhh yes, the old dentist dilemma was now front and centre. So yesterday we sat in the chair of a new dentist, a lovely man who my mum recommended and he not only spent at least 10 minutes slowly checking Eva's teeth, he used a scraper and prodder and pronounced that while she had no cavities she did have a deep fissure in her back tooth that food could get stuck into and would need a little plastic seal in order to prevent decay down the track. It would be a one minute procedure. 
I sat quietly. I nodded and agreed and made him reaffirm that there was definitely no decay. I made another appointment for two weeks time to get the seal done. Then I calmly walked back to the car and calmly drove home. Then I rang my husband and mildly exploded with outrage and relief. 
Because it is yet another example of how a second opinion has saved our little girl from unwarranted hospital visits, unwarranted medication (General Anaesthetics) that should never been taken lightly and unwarranted stacks of cash being removed from our pockets.