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, April 29, 2012

The Personality Primer

The sideways glance, the mini frown, the leg kick and more are little gestures and expressions that have become my personal handbook to what Eva wants and how she is feeling. I got this frown for the longest period ever when we went for a walk on her trike instead of watching Charlie and Lola (her current favourite show). It lasted long enough for me to take a photo of her which is saying something because most of the time these expressions last a few seconds or less and if you are not being extremely observant you miss them completely. In the past I think I've ignored or dismissed these expressions but now that we are communicating with the talking stick I can pin them directly on what is happening and it has become an eye-opener...



Last week I asked Eva if she enjoyed me going to kindergarten with her for the day. I had been rostered on and since I was there they didn’t bring in her aide. Eva’s aide is a lovely woman with two daughters of her own who has seamlessly helped Eva into one day a week of mainstream kindy. She is Eva’s arms and legs and voice and uses the talking stick with Eva all day.  So I did the same. We had a lovely day together painting, playing, dancing, reading and eating. So when I asked Eva if she had liked me being there I expected a yes, quite frankly. But she touched no. What the? So I said Oh c’mon it was fun hanging out with mummy wasn’t it? And there it was, the frown. Fleeting but firm and there was no mistaking it. So I knew. Of course, stubborn as I am I got Daddy to check as well when I wasn’t around. It was still no! Oh mummy; so uncool.


Friday, April 27, 2012

Time to arc up

In Australia the state of care for those with a disability is widely regarded as unfair, old-fashioned and basically frightful. The level of support you get differs from state to state and whether your disability occurred at home or not. For children like Eva, born with a disability (no matter when it manifests) there is no private financial insurance to support us. We have had to join the welfare queue to gain much-needed early intervention therapies like physiotherapy and speech therapy. Paying for these services privately with no private medical cover was bleeding our finances and when I gave up work to be Eva’s full time mum slash carer slash therapist we ate through all our savings within about 12 months. So apply we did.
To plead our case for deserving such assistance we were subjected to inches worth of paperwork that took almost 4 months to complete. We moved interstate to be closer to my family and were given my sister’s house to live in rent-free for 18 months while we established ourselves. On the advice of the welfare worker I saw I applied for one particular scheme over another and for the first year or so we received around $50 a week from the government to help with Eva’s expenses. It turned out to have been the wrong decision and after hearing from other parents the support I could have been getting we reapplied.  Again, it took months of our time and hundreds of pages of paperwork as it’s much harder to apply when you are freelancers like we are. I was infuriated that the misinformation I had received a year earlier left us broke and unable to receive any back-pay for his mistake.

Unfortunately this is the kind of story you hear over and over in Australia. And when it happens to you it makes you mad. Real mad.

About two years ago a campaign called Mad as Hell began and a year later the Australian Government Productivity Commission Report was presented on Disability Care and Support recommending the implementation of a National Disability Insurance Scheme. The recommendations are that the NDIS should:

·       cost-effectively minimise the impacts of disability, maximise the social and economic participation of people with a disability, create community awareness of the issues that affect people with disabilities and facilitate community capacity building. These measures should be targeted at all Australians
·       provide information and referral services, which should be targeted at people with, or affected by, a disability
·       provide individually tailored, taxpayer-funded support, which should be targeted at people with significant disabilities who are assessed as needing such support (but excluding those people with newly-acquired catastrophic injuries covered by the National Injury Insurance Scheme — recommendation 18.1).


While it would be wonderful to assume all this and more will be implemented there is much more work to be done gathering support for it and preventing political point scoring like this

I’ve joined a Family Advisory Council so that my voice and opinions on the intricacies of the NDIS can be heard. I’ve also joined Every Australian Counts and am surprised that with around 1.4 million Australians with a disability only around 112,000 people have joined the group. So if you haven’t already joined, now is the time. Disability can happen to anyone, anytime and it’s important that wherever in Australia you live and however you gained your disability, you are looked after by this ‘lucky country’ we all live in.

If you want to show your support, there are rallies around Australia next Monday 30th April 2012.  See http://everyaustraliancounts.com.au/ for details.



Sunday, April 22, 2012

Hope for Eva to This Rett Life

Sorry about the change in title and blog address but 'Hope for Eva' never sat well with me. I love her, I advocate for her, I hope that we find a cure for Rett syndrome but I don't hope for Eva in the way the title sounded.  She is her own little person with her own big personality. Even if it is hidden by silence and dyspraxia.

POSTSCRIPT:


When I first started this blog I had called it Hope for Eva. I then changed it and wrote the above post about why I had. That post gets an awful lot of views and I started to wonder why. I think it may be because it looks like it will be something about my personal version of how Rett syndrome changed what I had hoped for Eva. And I think most parents, if not all, feel that way and want to read about it. But it wasn't that. It was just a name change. But it got me thinking about what actually went from being Our Vision for Eva (Hope for Eva) to This Rett Life. So here it is, in all it's guts and verbosity.

Eva's dad and I are both commercial photographers and our friends are all kinds of people: shoemakers, writers, cafe owners, film makers, musicians, artists, stylists, chefs, builders and so on and so on. We only have a few doctors or business people amongst us and certainly no mathematicians or lawyers. So in our mind Eva had a very creative future ahead of her. I imagined her as a singer or a writer or a film maker. Although when tax time came around we would joke that we would encourage her to become an accountant so she could help us with our business affairs. We imagined moving to Vietnam for a few years and travelling the world and Australia in a van, home-schooling as we went and taking millions of photos. It never occurred to us to question a rich, happy and purposeful life ahead of her full of wonderful experiences and education. Though she was a little slower than her peers we always assumed she would learn to walk, talk and play with dolls. That she would grab my hand at the supermarket and lead me purposefully towards the lollies and toys. That she would scream out for me if she got lost or if she got annoyed or if she just wanted that pink cake in the shop window that I said no to. That she would whisper, talk and yell. Say 'I love you' and maybe even one day, 'I hate you'. Tantrums were ahead of us for sure, as were battles for good food over evil food, informative books over TV and Barbie and steering her towards a lovely genuine partner instead of some rebel we didn't approve of.

But well.. as you already know.. something different happened. This Rett Life happened. And all those things I had been sure we would fight for got replaced by fights for other things: for her to get enough physiotherapy, to get a supportive pram, get well quickly after chest infections, not get seizures, not die. Please god not die. And I lost my faith. I used to have an optimistic all-encompasing faith that didn't fix on one particular religion but was a sense of spirituality and higher purpose. That walked out with a slammed door behind it. I would overhear people say "it's just karma" and want to scream at them that they had no brain if they thought "karma" was responsible for Rett syndrome. I saw people get closer to their God through their church or mosque and wonder, absolutely wonder, how they could find it in them to believe in a God that was so confusing in this offering of pain so close to pleasure.
But just like that pithy sentiment of time heals all wounds, time did just that. I stopped crying into my lavender eye pillow at the end of yoga each Saturday. I stopped wanting to yell at people who had tattoos like "It's all part of the process". And I stopped judging myself so harshly for being so confused. And sometimes I even feel the same. The same as my friends whose kids are healthy and not disabled and the same as my friends whose kids are unwell and disabled. And I also (despite the amount of ranting and anger you will hear from me) find myself feeling lucky and blessed. I get to decipher wonderful gurgly songs and phrases at 4 in the morning, I get sleep-ins, I get cuddles and I get love. I have a front row seat to that knifes-edge play of life that I may not have otherwise ever bought tickets for.
And what has come about because of that is that strangely after two years I can say Eva will have a rich, happy and purposeful life ahead of her. But those riches, those joys and that purpose will be all her own and nothing I can yet imagine. And I will be there for her every step of the way as will our family and the family of wonderful friends, acquaintances and strangers that have all become the threads of this amazing blanket of support we have wrapped around us. Hope for Eva has been two years, four months and 2 days long and I have learnt so much about Eva, about me, about life and purpose and faith and love and fear and pain and patience and compassion and yet there is still SO much more to come in this Rett life.

The joy of quiet

We are back home in sunny, quiet Australia. It's amazing how blue the sky is and how loud the birds are. I do miss Shanghai though and my amazing sister, (one of two amazing sisters; the other is here) brother-in-law and nieces. You can't beat having a sister that is a Paediatric Emergency Specialist slash foodie slash chinese interpreter tour guide. And strangely I miss the Great Firewall of China! It was strangely relieving to not receive emails and not be able to watch youtube or tweet or do anything internetty.
Today Eva and I watched the most gorgeous heart-warming video and I noticed it was by a production company called Interconnected. I thought it was the perfect name.  I love that the internet has made people feel so connected and that we all know that we all feel the same things no matter where we are or who we are or whatever our religion. But then.. well, one minute I was chatting to Eva about the vid and the next I'd gotten distracted by two blogs (concurrently) and twitter whilst also replying to a text and making mental lists of things I had to do. I was silently involved in a world that stopped me from being connected to her. I was totally and utterly disconnected. And so I resolved today to have an internet sabbath while we are together during the day. The internet sabbath is something I read about a few months ago in a New York Times article by Pico Iyer called The Joy of Quiet.  I don't know how it will go and I'm sure i will struggle, especially with it being so sneakily available on my iphone but I want to have time that is designated family time with no screens coming between us. I'll try.

Friday, April 20, 2012

The Rett shakes

Absolutely nobody, no doctor, no layperson, no neurologist or scientist seems to know what the 'Rett-shakes' are exactly and why they happen.  The closest I've heard is that they are kind of epileptic but can't be controlled using ani-epileptics and seem to come from deep within the brain in the locus coeruleus. Wherever they are from though, they are pretty hard to get used to and are freaky to watch. It's like every nerve ending starts firing at the same time and in Eva's case she shakes her head from side to side, kicks her legs and her hands go into her mouth double-time. Occasionally she also giggles slightly hysterically but can always look at me when I ask her to and after a very solid full-body squeeze the shakes subside. She's never sleepy afterwards (sleepiness is common after an epileptic seizure) and never seems to be absent during them. They're truly weird. What's also weird is that loud noises can set them off and she gets them when we are walking along the street if there are trucks rolling by. And this is on suburban Australian streets where the traffic really isn't that bad. 
I was slightly apprehensive about walking the streets of Shanghai.. the beeping car horns, the ringing bicycle bells, the smog, the traffic, the noise, the mayhem. I was expecting constant Rett-shakes. But strangely, Eva had none.

Thursday, April 19, 2012

Smiles work in any language

Eva and I had a great morning walking through a park close to Donghu Rd and Huahai Rd in Shanghai where there were couples doing ballroom dancing, guys doing kung-fu moves, ladies doing taichi and some old men writing ancient calligraphy on the hot stone paving with brushes soaked in water. It was awesome. We stopped to watch the goings-on and had the talking stick out as we chatted.  A group walked past, silent but energetic in their presence and I looked up to see some furious sign language going on between about 4 people. Their silent signing seemed as explosive as the local dialect and was fascinating to watch.

Eva and I went back to our morning tea and chat and a few minutes later another group came past also signing and I smiled at them. That was all the invitation they needed to come over and dote on Eva and we went through the usual questions in basic universal sign language about her age etc but this group went further asking why she wasn't running about in the park showing me their fingers walking across their palm and pointing to the lovely grass. I managed to explain that though Eva's brain was fine her body wouldn't work and that we used the talking stick to communicate. They LOVED her talking stick and I showed them what all the symbols were for. Then they bent down and said hello to Eva and when she smiled at them they all erupted in big grins and furious sign language. Five minutes later a group of their friends turned up and we had a conversation with them too. It was such a joy to be understood. For all of us.

Tuesday, April 17, 2012

Strolling Shanghai


We’ve been having some fantastic experiences here in China..  some bizarre and some confusing but for the most part just lots of fun.

We have been loving how much the Chinese love children. It’s not just old people it’s young people and both men and women. They see a baby or child and it’s like it’s the best thing they’ve seen all day. There’s smiles and chats and a big love-in. Maybe it’s the one-child policy or maybe it’s just cultural but it’s great to experience.  Eva has been getting smiles and nee-hao’s (hello) and even a very dapper guy in his early twenties stared at Eva for a good 30 seconds then touched her cheek and said “she beautiful girl”. It’s the norm here. 

Old folk bale us up a few times a day curious about our little girl who is being wheeled around in a stroller slightly too small for her. Prams and strollers are rarely seen on the streets of Shanghai and certainly not used for children older than about 2. They ask me questions which of course I don’t understand but judging by their sign language seem to go like this: “How old is she?” they ask while holding up 4 fingers. I hold up 4 and they smile and nod with satisfaction that they got it right. “Why are her hands in her mouth?” and when I shrug with a what-can-you-do expression they try to tell her to take her hands out (in Chinese of course) and she continues without a moments lapse. Then they tell me that she might be cold and needs another layer of clothing. This last one is particularly funny at the moment as Shanghai is in the gorgeously warm throes of spring but because it’s so close to the end of winter all the children are made to wear multiple layers of clothing to prevent them catching a chill. I smile and nod and we continue on our way with the sound of them, surely discussing the cute but funny little girl in the stroller. It seems clear to me that they understand that a child of her age not walking has something going on but for the most part she’s just sweet, foreign and truly exotic.

In Australia it’s a different story. People are curious (I like to think) but will look away rather than catch my eye and will certainly never engage in conversation about Eva.  I don’t know if it’s social nicety that prevents this kind of interaction or the stigma of disability being different that clings even today. Personally I would prefer the questions. The stares and questions here in Shanghai don’t bother me at all. But maybe that’s because I don’t understand what they are actually saying!

Tuesday, April 10, 2012

Rett Syndrome and the art of travelling – part 2

Having a sick child while travelling is not ideal for any parent. Having a sick child who also can’t tell you what’s wrong is pretty revolting. Eva got sick on our first day in China – fever, runny nose, cough and generally very unhappy. I had a moment of thinking this was going to be the start of the worst trip in history but before I let myself get too histrionic I reminded myself that, as always, it’s just the same old story in a different place.
I have always started holidays with grand ideas that it will be just like it is at home only WAY better. But these days the reality is that life on holidays is the same as at home but generally much harder.. And there’s nothing that can be done about it except change my attitude towards it. So instead of eating dumplings and sightseeing we spent our first days in Shanghai letting Eva rest and recuperate but after 2 days we had a much happier girl with a lingering cold and cough and nothing too major. Not too hard, disaster averted. The xiaolongbao were still there when we did make it out.

Travel is definitely a challenge now that Eva is older and heavier. She’s only four but we spent the last year devoted to getting her to put on weight so we could avoid a gastrostomy tube and now she’s the right weight for her height she’s pretty heavy! If we don’t have a suitable supportive chair for indoors and a suitable pram for outdoors we end up doing a lot of carrying and as a result our back’s need a holiday from our holiday. We now have requirements like apartments with lifts or a ground floor room, bathrooms with change tables, restaurants that can heat up food we’ve brought and a host of other things new and unusual. I can see that our list of requirements will only get longer as Eva grows older and we will just have to adapt each trip. For now, it seems to be a case of finding things out as we go along and not getting too uptight if it goes wrong. Easier said than done...




Saturday, April 7, 2012

Rett Syndrome and the Art of Travelling - part 1


By nature I am a 
disorganised traveller and a light packer. I run around at the last minute grabbing passports and visas and then make do with what I have packed and buy whatever I've forgotten when I get there. But Rett Syndrome has changed that dramatically. 
It was more noticeable than ever last week as I packed for a trip to Shanghai to visit my sister and her family. My bag was heavy with necessities and consumables for Eva: Medicines, lotions and potions. Nappies, rice milk (strangely unavailable in China) and Epi Pen. Squeezy tubes of fruit snacks, oats, dairy-free Easter eggs and crackers. Phew. 
It felt like a totally ridiculous scenario to take so much for such a short time but these are necessary items now and this will be what travel is like from now on if we wish to do it with Eva. And we do. I have had a long standing love affair with overseas travel to non-English speaking countries and I plan on opening Eva’s eyes to the wonders of other cultures as mine were when I was a child.



I’m pretty impressed with myself that I managed to screw up just one (major) thing – the pram. We chose to bring her stroller rather than bringing Eva’s big supportive pram because Shanghai is a lovely flat city with fascinating streets to walk down but as the footpaths are generally narrow we thought the Stingray would be too big to fit. And there are usually people crowding the footpaths along with card tables for mahjong, or stalls of sreet food complete with woks of boiling oil. This accompanied with uneven surfaces and frequent dog poo makes it a tricky path for any stroller. But this little one that Eva has pretty much grown out of was definitely the wrong choice. For a start the small plastic wheels get stuck easily and she’s so tall now her feet sometimes hit the wheel sending the stroller off to the side. Eva has also been nodding off and falling forward on our lovely long walks. No good for her neck or for a decent sleep but seems to be pretty amusing for the old Chinese folk sitting out on the footpath watching the world go by!