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, May 29, 2012

What a day

I'm not sure today could have been a funnier day. It was such an un-expected treat that it takes precedence as a post over all the conference info. Firstly I had woken slightly deflated and shattered from the weekend: the Rett family conference was revealing and terrifying; the technology conference was just plain overwhelming. But then our Support worker turned up today and reminded me that I had time to get to yoga if I wanted to go. I was changed and in the car in less than 5 minutes. Knowing that Eva would be at home doing fun craft activities with someone who is respectful, intelligent, patient and who Eva just adores, helped immensely. Then I managed to do what happens so rarely for me in yoga - I left my busy head and arrived smack bang in my body. I felt so centred and for once wasn't on the verge of vomiting or crying during camel pose. Then I had two friends who weren't able to catch up which left me free for lunch with my other half, which led to me eating the most amazingly fresh Hervey Bay scallops cooked with a garlic herb butter; the whole thing meltingly divine. And they were cheap! Sweet!
So that was a pretty good day thus far. But then when I got home Eva had made some bookmarks for our friends in the Blue Mountains so off we set on her trike to post them. It was such a beautiful afternoon I asked her if she wanted to keep walking or go home. She set our path and got to direct wherever we went and as we turned right then left then straight, we walked past a house up for rent. A beautiful house with a ramp to the front door - exactly what we had envisioned in our family-planning the previous night. There was a lovely friendly man painting the railings who turned out to be the neighbour and told us to call back later when the owners were home. So off we went (Eva was taking me a back way to the park it turned out) and on our way home, met the owner of the house. Who happens to have a racial background similar to Eva's. Who is also a special ed teacher at a school we are about to check out. Who has a house that has been remodelled for disabled access as she thought her parents would live there one day. Who has about 3 friends in common with us. Who is moving overseas with her family for a few years hence the house up for rent. Seriously? Okay so it turns out the house is about twice the price of the one we are in so we won't be moving in UNLESS.. the story has a Touch-like ending about it. It certainly felt like the first 5 minutes of a new episode...

Friday, May 25, 2012

Brain strain gain

It's dark outside and I can hear the early morning traffic as I sit here with strong sweet tea and my glowing computer screen.  I woke up so early and couldn't get back to sleep because my brain is wide awake and on over drive. Yesterday was my first and only day at Spectronics' Inclusive Learning Technology Conference.  It was, without a doubt, an amazing experience.  Lecture after lecture I saw that more than 80% of the attendees were educators or Speech & Language Pathologists and therapists. And I heard Rett Syndrome mentioned many, many times, although that may be because I did attend all of Linda Burkhart's lectures! 
I learnt an incredible amount about how the brain works in establishing neural connections and how apraxia, so prevalent in Rett Syndrome, disrupts connections and provides such a challenge to communication. Basically, the harder they try, the harder it is to actually perform the task.  Interrupting and helping your child also disrupts the neural connections. Wait, wait, then wait some more.  I think I need a sign attached to Eva to remind me.
The technology and product area was mind-boggling and exciting. I took refreshments to see me through my perusals and came away with a truck load of brochures to go through and a plate full of food that I hadn't had time to scoff.  I tried out the latest Tobii eye gaze tracker and felt what it's like to use. It's pretty wild. I think if anything, Eva is at the perfect age to start using it because she will have lots of time to practice on the fun stuff before getting to the school work stuff. Its quite tricky at first and my eyes kept darting around the screen wanting to check everything out before I paused on just one. It was amazing to see how much was possible and how much I was able to physically move my body with it still tracking my eyes and it's much more lenient than one we trialled earlier this week. 
I've been quite sold on the idea of using eye gaze as a means for Eva to communicate but Linda Burkhart pointed out one glaring factor: it means there is a huge screen in front of your face when you're trying to talk to someone and girls with Rett Syndrome are SOCIAL. It's one of the reasons that it's being withdrawn from the DSM that lists it as an Autism Spectrum Disorder in America. Those piercing eyes Eva has, need to be looking at the person she's talking to, not at a screen. Maybe one day they'll create a clear screen that moves with your head but for now, that's all a bit Mission Impossible.
And so today, brain slightly tired, but excited and with neurons firing in all directions I'm off to the Australian Rett Syndrome Family Conference. Hopefully there will be plenty of doctors present that can stitch up my brain if it explodes.

Monday, May 21, 2012

Flower and Delicious

Eva has been under the weather all weekend with a cold and cough. I have noticed that when her body is busy with it's immune response she has no big shakes and seems unusually verbal and this weekend was a case in point.
On Saturday night while she was watching Tangled with her friends she said 'flower' at the point where the flower is found under the basket. Her friends reported it to us, as they always do if Eva says or does something they haven't seen before. Then on Sunday morning I was describing to Eva something I'd made for breakfast as being very delicious and she replied 'delicious'. 
Body and brain working together; magic for just a moment.

Wednesday, May 16, 2012

Downs and Ups

There have been some pretty exciting things going on that certainly rival the downers. 
So the downers this week ... what may have been Eva's first seizure (EEG upcoming), the return of her reflux, night-waking and seriously painful abdominal cramps that make her cry so so much.  But we're getting through those and tackling them one by one. 
Oh yeah, and Eva's GP who wasted an hour of my time this morning; who didn't know the Medicare rules and so sent me away without the referral I needed that I later found out she could have actually done. A. NNOY. ING.
BUT on the upside, I have joined a parent group that will aim to advise and comment on the National Disability Insurance Scheme in Australia. It feels good to be putting my anger to good use and also become more aware of the issues surrounding the NDIS in the process. While it's exhausting to be reading even more articles than I normally do it's such an important issue I can't stop. And it will feed into the issues surrounding education which is a double bonus considering I'm concerned (ok, furious) about that as well!
And I'm about to attend my first ever Australian Rett Syndrome Family Conference which is being held in Brisbane Australia. Can't wait to meet other families and hear all the latest from the researchers.
AND I'm attending the Spectronics Inclusive Learning Technology Conference which will have a talk specifically on Strategies for Communication & Learning in Rett Syndrome by Linda Burkhart.  Linda is a leader in Assistive Technology and Augmentative & Alternative Communication for children with significant disabilities. Huh? All you need to know is she's the seriously big cheese awesome person who can help kids that can't talk, to talk using all manner of things from the basic to whizz-bang. 
SO up my alley right now!

Friday, May 11, 2012

Photographing children with disabilities

I’m a photographer. Wellll.. I’m not working as one right now, but having spent around 12 years as one I think I qualify to keep calling myself that. I used to shoot food, portraits, restaurants, interiors and travel for a variety of magazines in Australia and overseas like Delicious, Cuisine, Qantas Inflight Mag and many others. Then when Eva was born I returned to work sporadically but as her appointments increased with each month from about the age of one, my ability to juggle both motherhood and work diminished. So. Decision made. Stay at home mum was I to be while my camera gathered dust. But boy have I taken some pictures of my daughter. I have about 5000 un-printed shots of her that are yet to be compiled into an album (yikes) and her portrait is currently travelling around Australia in an exhibition called “Celebrating Diversity” along with images by wonderful photographer Rick Guidotti.

So having spent over 4 years photographing a little wriggling worm who won’t keep her hands out of her mouth and who barely looks at the camera when I ask, I’m going to pass on advice for those of you keen to take more photos and to occasionally get some good ones! Your child has a disability and that won’t change but you can try and make the best of it or even incorporate it – it is part of them after all. While you will end up with lots of shots where they are looking cross-eyed with hands in their mouth and body slumped over, you will also end up with some stellar ones too.
Oh, and it turns out kids are a lot easier to photograph than most chefs. (Yes, hang your head in shame you masters of the kitchen who refuse to play nice)

So here are my tips for outdoor and spontaneous shoots:

Buy your child some awesome sunglasses.
And get them to wear them. Not daggy boring ones, but ones that have a bit of personality. When you have a child that has wandering eyes, a great pair of sunglasses masks that and looks cool in the process. It also stops you from spending a wasteful amount of time asking your child to look at the camera. In my case, she rarely does and I know it so I just move on, keep shooting and if she’s looking my way it’s looks like she’s looking at me. And that’s good enough for me.

Don’t stop shooting.
If you have a digital camera and I’m sure most of you do then it doesn’t really make a difference whether you take one pic or a thousand but the chances of you getting a great shot are exponentially increased the more you take. It’s no secret that professional photographers shoot hundreds of shots to get one great one.  We’re not bad at our jobs, we are just shooting patiently until we get that feeling – when finger on shutter, camera, light and subject hit some magical alignment and you get “The Shot”. Just make sure you edit them later and trash the ones that are terrible.
One of dozens from the same shoot that I should have trashed by now.

Keep the camera ready and handy
It’s often when the camera is away and you have moved on that your child decides to light up and be attentive. Have the camera ready and start shooting again. Yes it’s a drag for everyone else but you won’t remember that when you are looking at your awesome shot years later.

Get creative
If your child can’t stand but is ok on the ground then have her/him on your lap or on the grass. Restraining a moving child in a gentle way can keep their body still and make for some playful shots. Try them sitting on your tummy against your legs while you are lying down or lying over your tummy. Shots can be taken from overhead or from the same low position as your child.
Creative angle, colour, contrast and afternoon light.

Forget the camera is there if you are in the shot too.
It’s easy to get so worried about your child that you end up frowning or looking concerned at them. Lighten up. Get the pose ready and then head up, chin down and smile. If you have a bad camera face then practice smiling naturally in a mirror and try to recreate that. If all else fails then put on sunglasses too!

And some tips for Studio/Formal shoots
If you are sitting for a family portrait in a studio it can be pretty stressful if you are worried about whether your child will be in the mood to smile or even participate. Keep it stress free by being on time, dressed well with some changes of clothes and prepared with these tips:

Take a mini DVD player
With their favourite dvd of course. Have it on a stand just behind or next to the photographer’s camera and your child will be smiling and focussed. OK, so they may be looking slightly off to the side but it won’t be very noticeable. Just take note: do not play that thing til you are all 100% ready and in position to shoot!

Try some ABBA looks
I know, it’s a little weird, but if your child won’t look at the camera then you look at them and your partner looks at you or your other kid and so on. Can be pretty funny. Or just weird. Which is also pretty funny.

Try some one to one portraits close-up.
Just you and your child, sitting side by side (or lying down) face to face and the photographer can shoot from above or in front of just you two looking at each other. Cup your child’s face gently in your hands if you want them to turn back to you. These look good even if you are the only one smiling.

For the serious family thing
If your child has a movement disorder you can all get in on it by having all family members holding hands to provide some unity in the image. Or, again, sit with your child on your lap and hold their hands or tuck their arms under yours.

Tell the photographer everything
The photographer will very rarely know that your child’s condition may mean this or that. If you need low classical music and a warm room, tell them. If you need the photographer to treat your child no differently or to speak to them slowly but age-appropriately, tell them. If you know that your child is at their best in a window when you see the photographer about to put down the camera – tell them. Or in this case yell! They may be a genius with a camera but they can’t read minds. The more you tell them, the easier the process will be for you all.

Photographer’s in general have had to be jack-of-all-trades. They are used to being patient and shooting like crazy when things are going well. They have seen a variety of clients and not much will shock them. They will get so much out of learning about you and your family that it will hopefully be a wonderful experience for you all.

Us photographers are a curious bunch of people really.

Tuesday, May 8, 2012

Nuts for coconut

Oh boy do we love coconut in this house. It has solved so many issues in such a short time. Alternative to butter? Check! Alternative to milk? Check! Alternative to nut oil? Check! It helped Eva gain weight fast when she was underweight and provides an amazing source of nutritious fat that we use in both savoury and sweet dishes. Porridge with coconut milk and banana, aromatic chicken curry with coconut milk, coconut water and mango milkshake... My personal fav is the coconuttiest of all - coconut cupcakes. We use the oil, the milk and desiccated coconut and it is totally egg free, dairy free, wheat free and tasty as anything. Here's the recipe which is from our favourite cookbook "Wholefood for Children" by Jude Blereau published by Murdoch Books Australia. What a blessing to have been given this cookbook by a great friend. It has changed party food (which used to be a massive source of frustration for me) into something Eva and all kids enjoy, is nutritious and exceptionally tasty!

Vanilla and Coconut Cupcakes
Makes 12

195g (7oz/ 1 1/2 cups) white Spelt flour
1 teaspoon baking powder
3/4 teaspoon bicarbonate of (baking) soda
45g (1 3/4 oz / 1/2 cup) desiccated coconut

2 teaspoons apple cider vinegar
2 teaspoons natural vanilla extract
185ml (6 fl oz / 3/4 cup) maple syrup
125ml (4 fl oz / 1/2 cup) coconut milk
60ml (2 fl oz / 1/4 cup) rice milk
80ml (2 1/2 fl oz / 1/3 cup) almond oil, macadamia oil or coconut oil

Preheat oven to 180 degrees celsius (350 Farenheit / Gas 4). Lightly grease a 12-hole muffin tin.
Sift the flour, baking powder and bicarb soda into a bowl, add the coconut and whisk through.

In a separate bowl place the vinegar, maple syrup, coconut and rice milks and oil and mix together.  Add them into the dry ingredients and mix until just combined. Leave to stand 1-2 minutes - the mixture will look wet but will firm up as it stands.
Spoon into the muffin tin.
Bake 25-30 minutes or until skewer inserted into a muffin comes out clean. 
Cool for 20 mins in the tin then transfer to a wire rack to cool.

Eat as they are or ice/frost* them. Store up to three days in an airtight container and in the fridge in warmer weather.

(*My version is a mix of icing sugar, coconut milk and vanilla essence.)


Saturday, May 5, 2012

Failing our children

Anger has become a frequent emotion I experience since Eva was diagnosed with Rett syndrome. I get angry about all kinds of things: her disability, her future, the people who make us tick so many boxes just to get some help, the inadequacy of the government to support us and well… the list goes on. I’ve done lots of yoga and reading and some therapy to cope with my anger that is grief-related but the rest of it remains. But I’ve found this anger can sometimes be useful. I’m lucky to have been brought up by parents who encouraged me to take a stand if I felt so obliged and who taught me to argue (much to the dismay of my man, Eva’s dad). It means I have the tools at my disposal to take this anger and make it work for me. But there is this one new issue I have come across that makes me, even me, feel small, useless and really tired. I don’t know where to start. And I haven’t even scraped the surface.

It’s the Education system in Australia.

Tell me, would this make you uncomfortable about sending your kid to school?

-       You go to your first meeting with the school and in not so many words (and certainly not directly) you are told that your child may be better supported elsewhere. Hmmm..‘Supported elsewhere’…is that a euphemism for we don’t want you and can’t be bothered helping you?
-       At said first meeting you are told that the teachers have to work SO hard to adapt the curriculum to a special child’s needs and that it really is the luck of the draw whether you have a teacher that is good at that kind of thing. if your child is ‘special’ in a super-talented way, do you also get told that?
-       In order to attend a mainstream school your child’s intellect will be assessed despite the fact there is no assessment currently available for someone who cannot use sign language or talk using complete sentences. The person testing will use “their own ways and means” to assess them. Yup, sounds like quackery to me.
-       A school you go to see has a Principal who believes that a child only needs to be taken to the toilet (or have their pants changed) once a day. At the same time every day. And that is not a problem in her eyes.
-       Said Principal allows children to be tied to tables when other children in the class need assistance as this is the only way the teachers can be sure they will not run off or hurt themselves.  Despite this the Principal believes there is no need for additional staff at the school. She also allows staff to have children’s hands held on their laps and sat so close to the table they cannot move their hands so that staff can give them their lunch with minimal input from the students as there is not enough time to assist all children to eat their own lunch.

Wow, really? Yes really. Are we talking about animals or children here. Cos you know in Australia there was a storm of controversy over the way some cattle were being treated inhumanely in Indonesia. So you must have heard about this kind of treatment of children, right? Right?


So the first few are regular schools and the last few are what we like to call "special schools". I don't know about you but all of those things sicken me to the bottom of my stomach and I refuse to accept them for Eva or for any child with a disability. But how do I change what has been the 'norm' for so long? I didn’t even know about a few of these things until a few days ago and other parents who have known about it have been unable to do anything that changes the way the school operates. The education department also seems so accepting of this status quo when it is quite clearly an outdated, restrictive and discriminative status quo. 

And then if that wasn’t enough here’s the kicker if your kid might actually make it into mainstream school…

Across the country there is NOT ONE school that delivers mainstream education while also delivering daily, continuous one-on-one support to students who have extreme physical needs.

Does the education department believe that children with disabilities don’t deserve an adequate education surrounded by kids who represent the real world around them? 

It just makes me so mad. And angry. But so very sad.

Basically it means if Eva goes to a regular mainstream 30 hour a week school she will have occasional support, approximately 10 hours per week. This is for a child who cannot walk or use her hands or talk with words. She will either have to be tutored daily in order to keep up or be lucky enough to get a fantastic teacher year after year that will support her challenging physical needs. Or we go to a special school that delivers a non-mainstream widely varied education surrounded by students with severe physical and intellectual disabilities where there is never enough staff to support her and abusive, archaic systems of maintaining order in the classroom. Either way her access to what I thought was a given in Australia - a fair education - will be seriously restricted. And she is one of thousands of children across the country in this situation.

If Stephen Hawking was born in Australia and acquired his disability at age 2 instead of 21 imagine what the world today would be without. This is a man who is regarded as one of “the most brilliant theoretical physicists since Einstein.” Wow. A brain as large as a planet could have been restricted because of his disabilities in what is meant to be a thriving developed country.

Eva may not be the next Stephen Hawking but who is to say she won’t be? Even without the potential of a cure for Rett syndrome in her lifetime I believe she needs to have as normal an education as possible to segue into regular life.

I understand that the government has limited resources and many issues in various areas. They love to tell us what they don’t have. But there is an awful lot of money that can be found if need be. Surely this shows the need is there and the money can be found somewhere, somehow to serve our kids better.

To the Department of Education Australia I ask,  WHY ARE YOU FAILING OUR CHILDREN?