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, December 20, 2012

Art for Eva

If ever there was a time of the year to feel gratitude it's probably about now.  But that word doesn't quite sum it up for me.  Blessed, maybe a little closer. Awed, most definitely.  And I feel all this most acutely at the moment because last week our family experienced the most incredible support from our local community.
Last Friday night our dear friends Ryan and Danielle from Ryan Renshaw Gallery had an event called Art for Eva to raise funds towards buying Eva a piece of equipment. It was such an amazing night!  There were beautiful artworks of all kinds all over the gallery, there was delicious food and fancy wine, there were fantastic raffle prizes and most importantly there were a bunch of people all there to gather festively and celebrate all these things in the name of our little Eva.
Ryan's wife Danielle instigated Art for Eva back in 2010 not long after we became friends (we see eye to eye on many things but also physically standing at about 5'2" each!) and raised enough money for us to buy a standing frame and a supportive stroller. She's a dynamo with energy as electric as her big big heart. We weren't sure we would have an Art for Eva again especially since this year Danielle also organised her wedding. But with a very short time frame and a huge amount of help from gallery manager Pia Robinson, we did it. 

Over 60 artists donated works that were all put up for sale with no name attached and for a fixed price. You would get to find out the artist name after buying it. There were some incredible pieces and some big name artists and many works that were clearly worth far more than the price tag. A couple of artists who donated works were too well-known to produce a work under thousands of dollars and their work was auctioned. Art-lovers descended (and lined up at the door) to buy beautiful art and in the process assist us in buying Eva an eye-tracking computer that will enable her to finally have a voice. But it's the artists themselves who deserve a massive and sincere thanks. Their generosity was overwhelming and walking around the empty gallery at the end of the night was testament to their beautiful works. And Ryan came up with a wonderful idea to bring the idea of giving and charity full circle: for the purchaser of the work to get in contact with the artist and donate something in return - a bottle of wine or time or something else. We know one person has already offered his PR experience in return for the art he received!

The night itself was quite simply a big buzz. We've heard from so many people that they had so much fun and felt a real sense of love and community whilst there. We had sponsors who fed and watered us with delicious cheese, salmon, olives, roast tomatoes and bread (thank you my dear gorgeous friends from SISCO bcl) and beer, cider, red and white wine (thank you Shannon and Spiros). Sponsors who helped (thank you Urban Art Projects!) and sponsors who donated big amounts of money (thank you Link at - Assistive Technology who are giving us a massive discount for the computer! and Bank of Queensland who so quickly offered financial support).  We also had raffle prizes donated from a huge variety of sources who so willingly said yes when we asked for their support - what gems!

The tobii c-eye eye-tracking device is an incredibly expensive piece of equipment and something we thought would take us a very long time to acquire. But the Art for Eva has brought us incredibly close to raising the entire amount needed to buy the tobii C-15  and all the attachments required! This device was most likely originally designed for people with cerebral palsy or spinal cord injuries for whom communication is near impossible and they cannot use touch screens. But the international Rett community has found them perfect for many of our girls and women who can't sign, can't speak and can't use their hands to press buttons or screens. Eva may go cross-eyed sometimes but her gaze is the strongest communication she has and we have been using a very low-fi "talking stick" all this year. But a talking stick requires someone to hold it and someone to ask Eva the questions.  And they always have to be closed questions that can be answered easily. The tobii computer will enable Eva to instigate and continue conversations and choose when she wants to speak rather than waiting for us to ask questions of her.  I can hardly imagine how exciting this will be for Eva! Being able to ask for what she wants and to tell me what she doesn't want! But also how daunting, as it will be like learning a new language for all of us. It may take her some time but having this computer so soon will give her such a head-start. 
I can't possibly express how grateful, blessed, excited and awed we feel to have this within our reach thanks to the generosity of our friends and community. So I'll leave a picture instead that says so much.  I look at this and imagine all the things going through Eva's mind but thus far have never heard. To hear these one day will be a dream come true.



Thursday, December 13, 2012

Peaceful warrior

I take a lot of photos of Eva asleep. Rett syndrome affects mitochondrial function and so everyday tasks are exhausting for her.  Eva still requires at least one sleep a day or a couple of catnaps and as one of her friends at kindy remarked, "She's just pretending to be Sleeping Beauty"!  I've got shots of Eva asleep at kindy, asleep in the car, at physio, in the hospital, on the couch, in the middle of dinner, sitting up, lying down. She's fallen asleep in the most hilarious places.  Many of them have been shot at night and they're often too dark to see much detail but I keep them nonetheless because I can remember how beautifully peaceful she looks. Like most parents I gaze adoringly at my child while she's asleep and forget about the annoyances or troubles of the day as I watch her little eyelids twitch and her breath rise and fall with satisfying regularity. For me it's also a chance to see her body at complete and utter rest. There's no teeth grinding, no breath-holding, no crossed-eyes, no hands in her mouth, no trembling or tapping or shaking of legs/arms and not one single thing that could physically identify her as having Rett syndrome. Peace.


















And sometimes she's also asleep while her friends watch and wait for her to wake up and join the fun again.  Here she is with her good friend Miss P. Eva and Miss P have a lovely friendship that has spanned just over two years. And we are godparents to her little brother. Her parents are pretty special too! More on them in the next post...



Wednesday, December 12, 2012

Just a wee rant..

Now don't think I'm not incredibly pleased that local councils are starting to provide some playspaces for kids of all abilities. I am. But for goodness sake will the governement and local councils PLEASE get smart and talk to parents who have a child with a disability before they spend more money on ridiculous things. My point: many of the local parks in my state have been fitted either with a euphemistically titled 'Liberty Swing' that requires a KEY to use (the key is of course not nearby - no, you have to speak to your local council to get it and then it takes about 30 minutes to figure out how to strap your child in it) or this one below right:


Now this swing looked like it could be really good. I was quite excited when I first saw it. But there are a couple of things I think should have been addressed by the council before they installed it.

1. For a child too big for the toddler swing on the left, the swing on the right is way too large and can't be adjusted. Leading to what looks like could be kinda dangerous if not just really bloody uncomfortable: choices being ear decapitation or a pirate-eye view.
2. If you're going to the trouble to put in an all-ability swing large enough for a teenager why would you put it next to a toddler swing and not put it on the other side of the park next to the single strand swings that big kids and teenagers swing on i.e. the peers of that person who needs the supportive swing. That's not very thoughtful or indeed promoting inclusivity to put a big kids swing next to the babies.
3. I'm quite sure there are plenty of parents willing to offer advice on what would work for kids with a variety of disabilities. Think of the money you could save by putting in effective and useful playgrounds for kids of all ages/abilities?! Please just ask - there are parents out there just like me: ready, willing, ranting and able.


Ear decap - happy though!
Arrrrrrrr

Sunday, December 9, 2012

A new room

We've finally moved into a house that only has a few stairs to contend with. It's been a very long time coming and the packing and unpacking has been hellish. But Eva now has the darkest, coolest, most quiet room in the house and is sleeping like the proverbial baby. 
In Australia, summer mornings start early - the sun starts a slow glow from 4am and days are begun with the screech of sulpher-crested cockatoos or crows and then kookaburras 'laughing' - their call sounding like they are cackling maniacally at your attempt to go back to sleep. And in Eva's case she usually doesn't. We've been having 4am to 5am starts most mornings. Until now. What bliss! I feel like laughing right back at those crazy birds.  She's been sleeping til at least 7 and we've had to wake her a few mornings for breakfast.
It also means one other thing that to me is a big deal - she can stay up a bit later at night. Most nights in the past she's been knackered and asleep by 6.30pm. I know most parents would love the chance to spend nights with their kids asleep by that time but I have constantly wished we could just watch a movie together or go and enjoy an after-dinner walk. It's finally happening... Tonight we watched Arthur Christmas (all the way to the end!!) and I got all teary because we finally got to share an evening activity together. 
It takes me back to the days prior to Eva's regression into Rett syndrome when we went camping with some friends and Eva was awake almost all night. She was mesmerised by the fire, the chats, the friends and the excitement of it all. I was so incensed at the time that she wouldn't just fall asleep. What a change...


Tuesday, November 27, 2012

Goodbye Conductive Education

Our school year is coming to an end here in Australia.  We are about to see spring jump into summer and our long holidays begin. And for Eva it is the end of kindergarten and the buildup to going to school next year for Prep - a non-compulsory year before 1st grade that runs 5 days a week just like school.
While both Eva and I are excited about school next year it's going to be sad saying goodbye to our Conductive Ed. family this week - the teachers have been incredible, the parents have become good friends and were such an amazing source of information about disability services, funding and advocacy and the Conductive Ed. program was without a doubt hugely beneficial to Eva over the last two years. But I've decided (after much research, meetings and angst) to enrol Eva at a mainstream school next year. It is my personal feeling that with the distinct possibility of  Rett syndrome being curable in Eva's lifetime that she get as good an education as possible. It is no doubt going to be challenging for all involved to teach a child that can only use her eyes and is a bit cross-eyed sometimes (ha!) but so be it. We'll take it one day at a time and just go with it, like our dear Conductive Ed. teacher told us to.

Eva's main teacher at CE (Miss N) holds a very dear place in my heart because she brought out so much in both of us. She truly believed in Eva right from the get-go. She was fearless in her assumptions about what Eva was able to understand even when I was still unsure. And she was right. She taught Eva to respond - even if it wasn't a word we could understand, it was important that she at least acknowledge she was being spoken to and attempt to respond. That has encouraged us to push Eva more and now she has complete 'conversations' with her grandmother, Nana, who lives on the other side of Australia. Nana asks questions, waits, and often has to wait some more and then Eva responds. It's simple but it's a conversation and has helped build their long-distance relationship. Learning to wait and learning to expect more from Eva was part of our experience at Conductive Education. We learnt the importance of daily stretching, excercise and integrating movement into her daily life. It is something we must keep up next year if Eva is to have any chance of walking and keeping her scoliosis at bay. 
We learnt the importance of Eva being a part of her needs. At CE you don't feed your child, you help them eat by putting your hand over theirs and guiding them. You don't carry your child around - they walk (even if they need all matter of equipment and hands-on assistance to do so) or ride a trike. They have to do things themselves and listen to instructions embedded in songs. We parents have to be firm and fair and not allow learned helplessness to creep into our child's life. I have felt that it's been as much an instruction for me as a parent as it has been for Eva as student.
Over the time we've been there Eva's walking ability improved, her stamina improved, her social skills improved and we saw her quirky sense of humour emerge. One morning the children were learning about the letter S and Eva's teacher, Miss N, put on some sunglasses to demonstrate S words and objects.  But the sunglasses were shaped like pineapples and Eva cracked up every time she looked at her. 
And throughout this time at CE I have learned more about the neuroscience behind my daughter being trapped in her body and that every little movement she can make is fatiguing for her. I learnt to treat her as her age, not her capability-age which leaves her at about 8 months - the time her Rett syndrome regression began. One mum at CE commented to me that she finds it easy to believe in Eva being intellectually "all there" simply because I treat her that way every day. It was a great insight into why age-appropriate treatment and conversations with Eva are so important - even for those who are in the world of disability as a parent, educator or therapist. The battle of educating people in how Rett syndrome manifests in Eva and to encourage them to believe in her ability is exhausting. It seems never-ending sometimes. But I have to remember it took me some time to learn and we can't all be as amazing, open-minded and brave-hearted as our dear Miss N.

Friday, November 16, 2012

Home-ground advantage

The last few months we've had speech therapy sessions at home and I've noticed a huge difference in the way Eva relates, learns and responds when she's on home turf.  Like sporting teams worldwide, she's happier, more comfortable and well-supported on her home-ground and it's particularly noticeable socially as well.
Last week when we went to a birthday party Eva scowled, frowned and ignored her way through the entire afternoon.  I felt like I had a moody teenager on my hands, not a five year old.  It was disappointing to see her not interact with anyone, even with those who were directly engaging with her.  I wondered afterwards what had happened to make her so distant. I now realise it was a combination - the party atmosphere was too much to handle with the external stimulation and quite probably her internal expectations that her apraxia (brain wanting to do something and body not responding) interferes with. But also that on unfamiliar ground we were all a little off our game. I can't say I was nervous but any social outing with people we don't know really well brings all kinds of mild tension from how Eva will relate, how can we help her be involved to how other parents will relate to us given that we seem so different at first glance.
Contrasting that with a visit earlier this week from three people she'd never met, but who came to our home, she was communicative, bright and sociable. She answered questions with a verbal 'yeah' or 'uh' which isn't a daily occurrence anyway but especially rare unless she's really comfortable with people. That these three people were 2 adults and a child with Rett syndrome may also have had a huge amount to do with it. They asked Eva age-appropriate questions in a normal voice and gave her lots of time to answer. She clearly felt very understood!

Wednesday, November 14, 2012

Grief

I read a beautiful article in Whole Living recently about a woman grieving her mother's death.  Titled The Long Goodbye, it was so well-written and summed up so poignantly all the aspects of grieving. I am fortunate to still have both my parents alive and well but I found the article aligned with many of the things I felt over the last few years after getting Eva's diagnosis and wanted to share it here:
http://www.wholeliving.com/185568/long-goodbye

As the writer mentions, finding time and space for grief - even if I do believe that my child will one day be cured of her disability (as I quite optimistically do)  - is still important. If only to deal with the extra stress and busy life that having a child with a disability brings. Grief for me is not an emotion to be solved and stored away. It's quite meandering and lingering but it's also been hugely transformational. Reading, talking, doing yoga and meditating has opened up in me an empathy that didn't exist prior to Eva's diagnosis. And while it makes me feel like I have a concrete block sitting on my chest some days and a gaping wound where my heart used to be, it also means that I want to be proactive in helping others and making this world a little more equitable for all. Sure, I am just hassling my local MP for now, but small steps with a process and progress nonetheless.

Monday, November 5, 2012

Blast from the past

This past weekend I lounged in memories from my childhood courtesy of my mother's record collection.  I took great delight in playing the Sesame Street Singalong album to Eva and despite her wary gaze, gave a very exuberant rendition of John Jacob Jingleheimer Schmidt - one of my all-time favs on that record along with Sing. You can hear an excerpt here https://itunes.apple.com/us/album/sesame-street-bert-ernie-sing/id391019308 - numbers 18 and 21!  My sisters and I must have listened to that record so many times that almost all the songs are burned into my memory and the songs, words and memories kept flowing when I played Billy Connolly's Words & Music live album.  If you can find and listen to the song 'If It Was Nae For Your Wellies', I highly recommend it. I also found an album that I didn't think I'd listened to as a child - Hits from South Pacific, Oklahoma and The King and I - but sure enough with each song that came on I found myself able to sing along, almost knowing the words by osmosis.
Prior to this outburst of singing and wandering down memory lane I'd been in quite the funk. And not the get-down-dancing kind.  A very sad, strange and lonely place of worrying about Eva - how will I teach her to read so she can enjoy the kind of freedom that I found as a child in being able to devour books, how will she enjoy life when it's filled with so much that she physically can't do, how will she look into rockpools at the beach now that she's almost too big to carry and can't hold her body up alone and so on.  The downwards spiral was compounded by being near the beach seeing children frolicking in the water, building sandcastles and discovering the world around them as they picked things up and asked questions - the two major things Eva can't do and which stultifies her ability to access life, the universe and everything. This kind of funk isn't a regular place for me and I didn't like being there but it has had it's uses as well.  I'm slowly letting go of wanting Eva to have the sort of childhood I had because quite simply she physically can't go out on her own building cubbyhouses, riding a BMX and climbing trees. But she can be read my favourite stories of flower fairies and listen to music and maybe even learn to surf (we've found a surf school that teaches kids with disabilities!). And she may not have the stamina for doing any of these things on the days we organise them and may not even enjoy them and that's just something else to roll with and let go of.  And in the meantime I'm going to just keep on singing loud and proud all the songs that make Eva laugh or cringe because it's the most wonderful calming release to help get back on top of life.



Thursday, October 25, 2012

What's wrong with her, dear?

Since getting our disabled parking permit I've felt slightly fraudulent parking in the disabled parking bays while simultaneously gloating that I get a park so close to where I need to be.  The fraud part comes from a very strange place within me... I seem to have been unaware just how disabled Eva really is for a really long time. It's not that I don't think about it often - in fact Rett syndrome crosses my mind daily whether we are together or not. But I realise that I have been waiting for passers-by to tell me off for parking in a space reserved for the disabled. As though I were a fraud for having the permit. Except that situation has never eventuated because clearly it's plain for all to see except me. 
I make the daily assumption that people see the little girl beyond her crossed-eyes, her hands going double-time into her mouth, her garbled vocalising and that she is a full-grown five year old in a buggy. How I manage to do this is beyond me...maybe it's because she's an only child.. When people stare I usually smile and imagine they are thinking what lovely thick hair she has or what long eyelashes. Every now and then it hits me quite suddenly: I'm pushing around a 15kg girl who sounds like a baby and often is unable to even look at the person speaking to her, let alone answer 'hi'. And sometimes she shakes like she's possessed. Which seems to be particularly frightening for parents of young children around us (although they are never compelled to ask if we are ok!).  It confounds me that people don't attempt to understand her quick eye-gaze, her miniscule smile and her lightning fast frowns and I forget how unnerving it is to ask a child a question and get no verbal response. But it offends me beyond words when people make the assumption that she is intellectually disabled simply because of her physical disabilities. Don't get me started on that one.
The other week while Eva slept in her buggy and we wheeled around my favourite antique/junk store (my Breakfast at Tiffany's-style "happy place") one of the older staff came up to me looking very kindly and asked "What's wrong with her, dear?".  My initial response of "Oh, she's just tired, it's been a big day" was of course not what she was really asking and since I had been there for around half an hour and had already found my happy place I was able to answer her questions with honesty about the syndrome, how it affected Eva and in turn what effect it had on me and my family. It was a lovely honest conversation that happens so rarely it left me feeling more empowered to speak about this syndrome that so few have heard of and also made me realise there's something quite nice about being unaware of just how disabled she looks.  Perhaps it's because she can be a cheeky monkey, a little ratbag and a sweet darling - all by using her talking stick and facial expressions - that I can look past her severe physical limitations. Long live delusion for as long as possible I say!

Wednesday, October 17, 2012

Rett syndrome

Rett syndrome presents so uniquely in each child that if it weren't for a couple of similar signs I'm sure it would seem like every single child had a different syndrome.  For Eva, the main criteria that kept my late-night google searches returning to Rett was the fact that she had stopped babbling and was putting her hands in her mouth constantly and not using them to hold things.  Before we had the genetic test and before the Paediatrician pooh-poohed my suggestion of Rett syndrome I turned to the internet constantly to figure out what was happening to my baby who at 9 months was still not crawling or sitting on her own. And I kept seeing Rett syndrome in the outcome. But at that stage she only showed two of the five main criteria. She didn't have cold feet or hands - in fact the opposite was true. She wasn't disengaged or crying - although later at around 1 year old she started staring through us for about a month until we took her to a naturopath/acupuncturist who treated her so quickly it was completely over within two months and didn't return. And she wasn't having seizures and still hasn't.
Looking at a list of what could affect her in the future if she was diagnosed with Rett syndrome I was terrified that it could be true. But I was equally terrified of never finding a diagnosis. I desperately needed something to grab on to and try to treat as best I could. A non-specific diagnosis would have almost been worse than getting a diagnosis of Rett. For 18 months in limbo-land while the doctors were doing all the tests besides Rett we just did the best we could and told ourselves that things were going to turn out ok. It was just a blip and Eva would one day miraculously recover. I would try and make Eva hold things, I would try and make her repeat sounds, I would try and make her play on the equipment at the park. But then Eva started crying. A lot. And biting. A lot. It took quite some time to figure out that the crying was severe gastro-intestinal pain from which a hot-pack and singing would help immediately. The biting was more of a mystery until we figured out it was Eva's way of communicating to us that she needed something or wasn't happy. It quickly stopped when I started talking to her instead of about her and checking in on what she might need.
Down the track now she's five years old she still gets severe tummy pains sometimes and she's only bitten me on occasion when she's extremely frustrated or tired. She still has hot (and tiny) feet and isn't getting seizures. But she cannot talk or sit herself up, she can't feed herself or walk and the only thing she can hold with any consistency is the handle of her sippy cup. She has a smart brain and a quick sense of humour that remain mostly unknown to those outside her inner circle. It's physically a bit like having had a 6 month old baby for five years.
But the possibility that this could all be reversed in her lifetime is the light at the end of the tunnel. Which is why Rett awareness is so vital to the research and for funds to be directed towards the right scientists. It's the reason why the Rett Syndrome Research Trust, Cure Rett, Girl Power to Cure and the International Rett Syndrome Foundation exist - to direct funds towards developing a cure. Given that Rett has been able to be reversed in the lab it's surely only a matter of time... With an estimated 12 girls born every day with Rett syndrome there's an awful lot of parents waiting and hoping.

Friday, October 12, 2012

Where did October go?

There are some months that I feel like I just get into the swing of things by the time it's almost over - October seems to be turning into one of those.  October is Rett Syndrome Awareness month and I had so many things I thought I'd blog about and I can get to those eventually I suppose..  But our month so far has been about our kindy holidays (Spring holiday) and we have been trialling the Tobii PCEye - an eye-gaze computer.  It's so fantastic and so incredibly inspiring to see what Eva could possibly do with it.  The software is great, the practice games were great and we even used the alphabet board to see if Eva would like to do some spelling.  She spelt out biib (bib) no. I asked her whether she wanted to not wear bibs anymore (we mostly just use them at home) and she gave a very clear no. So we've stopped using bibs. Fair enough - she is five after all.  It has led us to start asking Eva all kinds of things that we have taken for granted since she can't vocalise her dislike: Lavender in her bathwater (that I've been doing since she was a baby)? No thanks Mum.  Daily calendar duty (picking day, month, date, weather) that we've been doing all year at breakfast? No thanks Mum. So it's no more assuming from us anymore!
We've also been doing holiday things - going to the park, picnics, trips to the beach and generally just resting (around the pre-scheduled appointments I didn't realised I'd made for the holidays).  Spring in Australia is an incredibly lovely time - warm, sunny, flowers blooming and one tree, the Jacaranda, is in full Rett Syndrome Awareness colours - purple! They are blooming madly and leaving purple floral carpet all over the place. This first pic of Eva was taken amongst the Jacaranda blossoms with her Mama (grandma) before we had a diagnosis.

Eva aged two 1/2
Jacaranda blossoms

Spring holiday beach trip!


Building sand castles

Wednesday, September 26, 2012

Oh porridge

I come from a family of porridge eaters. It's in my part-Scottish blood and was the breakfast of choice in all the Scottish comics my Gran would send me that I used to devour as a child. So of course the first breakfast cereal Eva ever ate was porridge. And she liked it! So for about four years she has eaten porridge. Porridge with rice milk, porridge with stewed fruits, porridge with coconut milk, porridge with blueberries, porridge with rhubarb, porridge with banana and even porridge with dark chocolate and raspberries!  But finally and really, as expected, Eva pursed her lips, stood her ground and refused her porridge. And again the next day. And the day after that.  We tried some cereals - she ate two mouthfuls and it was too sweet. We tried gluten-free toast - she ate three mouthfuls but it was too hard to chew and got gluggy. 
Racking my brains for what else a wheat-free, dairy-free, egg-free child could eat that would be nutritious I came up with one thing. Scrambled tofu! I thought I was a genius. Eva liked the idea of it (I'm not sure she'd eaten it more than twice before) and so for three glorious days she had tofu - scrambled with tomato and oregano, curried tofu and then tofu with caramelised onions and fresh herbs. Then that was that. Tofu lost its appeal and porridge is now firmly back on the menu.  At the moment she's (dare I say) enjoying porridge with banana, raspberries and coconut cream.  It'll suffice for at least another year I hope... If you have any other ideas for me I'd love them!


Bedhead and hot porridge
Eva helped with breakfast -
empty bowl; porridge everywhere!
                        



Monday, September 24, 2012

Lovely Yellow Dress Day

This weekend past I attended a very lovely book launch that also happened to be a fundraiser for the International Rett Syndrome Foundation (IRSF)!  Author Michelle Worthington has been longtime friends with a family who have a little girl, Ava, who has Rett syndrome and one day after spending time with Ava she went home and wrote a story about her! Just like that!
It's a gorgeous tale of a little girl called Ava who has particular coloured dresses she wears on particular days.  The illustrations by Sophie Norsa add such beautiful imagery and when I read the book to Eva she grinned the whole way through.  The author and Ava's mother organised the book launch and an online raffle (including a signed t-shirt from Olympic multi-medal winner swimmer Alicia Coutts) and Michelle is kindly donating 5% of her royalties to the IRSF. I bought one book at the launch, had it signed for Eva and now want a whole bunch more to send off as Christmas presents! If you're keen to buy a copy click here for the link to Michelle's online store.



We finished up our weekend at a sunset birthday party for one of Eva's close friends and it was one of those wonderful rare occasions when Eva was just so on form. Earlier she had proudly dictated what was to go in the birthday card and kept indicating she wanted to write more.  I eventually ran out of options to give her and asked her if she could try to say it or something like it. She pursed her lips and smacked them together - it was kisses she wanted put on the card! She was so proud of it! When we got there her friends came up and said hello and they are all such kind and gentle little girls giving her a hug or touching her arm to let her know they care. And even though she couldn't run around with them or talk with them she smiled and glowed the whole afternoon. When the birthday girl took great care and time reading the birthday card Eva wrote I thought she was going to burst with happiness. I know I was!

Friday, September 21, 2012

Hands off medicine

We've had a pretty full schedule of appointments lately - Neurologist, Immunologist, Spinal Clinic, Opthalmologist as well as our regular physiotherapy, speech therapy and kindy.  I'm not sure how we manage to squeeze all these things in and still find time to eat, sleep and talk to each other.  But the good news is things are going along relatively smoothly for now.  Eva's eyes are still squinting when she focuses on things up close but we don't need to change her prescription.  Her immunisations are being done under medical watch in case she has an anaphylactic or allergic reaction - so far we've had the MMR - Measles, Mumps & Rubella vaccine - the most worrying as it has egg albumin in the ingredients but fortunately Eva had no response.  Our Neurologist said we don't need to start any anti-epileptic medication as the shakes Eva gets were captured on her latest EEG (Electroencephalogram) and don't show up as epileptic in nature.  But like most girls with Rett syndrome there is a high chance she will develop seizures and we are always alert for the signs.  Another frequent occurrence in Rett syndrome is scoliosis and Eva's curve was measured via x-ray at our hospital Spinal Clinic and has moved from 13 degrees to 20 degrees in the last year but as she was slumping slightly during the x-rays (it took them 4 goes to get it right) the degree could be incorrect.  However the fact that Eva's spine wasn't checked by the Specialist with his eyes and hands is slightly worrying.  I'm wondering if it's normal practice these days to just tick off an x-ray and whisk patients through rather than conduct a hands-on observation which would naturally take more time.  Earlier this year when we discovered Eva had one leg shorter than the other she was put through numerous x-rays as the Specialist could not measure her legs by hands and tape measure alone.  They even wanted it done under a general anaesthetic so she wouldn't move which I quickly declined!  Makes me wonder what they are taught when they can't measure some bones the old-fashioned way.  And on top of that, the cavalier way x-ray's are ordered is concerning to me as a parent of a child who will most likely be having them year after year.  It was only recently, and at my request, that they started putting a lead cover over her ovaries and parts of her body that weren't being x-rayed.  I now take the precaution of wearing the lead vest and the thyroid cover every time I'm in there.  Of course I'm told that the research shows it can't possibly have an effect on us but I'm suspicious - if it can have an undesirable effect on a foetus then I think it's worth being wary of.
But for now, the yearly-review x-rays and tests have been done and it looks like we won't have to have any more for a while, fingers crossed. Although Eva does seem to take most of this prodding, poking and testing in her stride and apart from the occasional glare or rolled eyes she's pretty good-natured.  It's mummy that gets upset!

EEG at age 1- a bit concerned





EEG at age 4 - pretty chilled out about it now.




Monday, September 10, 2012

Finger Fundraising on Facebook

No, not in need of a hand transplant here- just need your fingers to do some tapping on my behalf!  As some of you know I'm not on facebook. Yes, shock, horror I have no 'friends' and I don't 'like' things.  I'm weird.  Let's just dispense with further discussions and move right along because I need you facebook folks to do something:  
Could you please vote for the Rett Syndrome Research Trust (RSRT)* to win $250,000 in the Chase Community Giving Challenge? The RSRT is doing amazing research into Rett syndrome but it is an incredibly expensive process.  Imagine if that grant was the one that helped them find a cure. Awesome!
Just go to this link before the 19th September and vote and like and ask a friend and tell your mates and do all those cool things I'm missing out on.  But look out for me cos I will be on there soon.  And I'll be voting up a storm too. 
http://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=ein|26-0687439|ref|b41e6a5c37


* A bit about the Rett Syndrome Research Trust adapted from their website www.rsrt.org.

The Rett Syndrome Research Trust is only four years old, but our unique and effective strategies to support and stimulate research have been developing since 1999, when Huda Zoghbi identified the genetic cause of Rett Syndrome.  In response to this turning point, a small, determined group of parents established the Rett Syndrome Research Foundation to accelerate and intensify scientific exploration. Co-founder and Scientific Director Monica Coenraads (mother of a girl with Rett syndrome) set a tone of dynamic exchange, energizing the field with new approaches, conferences and seminars and the engagement of extraordinary scientists from diverse disciplines.  The Rett Syndrome Research Trust is known for innovation, intellectual rigor, deep knowledge of the field and nonstop determination.


Down on the farm

We had a farm visit with Eva's kindy group the other week and it was fabulous for so many reasons not least of which was her thorough enjoyment of it all. Eva milked a cow, fed a calf, rode a tractor, a horse and a bull (!), fed some lambs, held a chicken and had her photo taken constantly. 
Spending that amount of time with a diverse bunch of kids Eva's age led me to realise a few things I've been missing in our communication. The most important being that kids her age tell funny little fibs quite often.  The boy sitting near us said he saw elephants hiding behind trees and believe me there are none in Australia except in zoos. When I asked Eva if she could see an elephant too she looked straight at yes on her talking stick. If I hadn't been in the presence of a regular little kid her age I may have thought she wasn't using her eye-gaze system properly.  
The kids were also very easily distracted and often ignored questions they didn't want to answer or would make up something completely random in order to respond and move on.  If these same desires are in Eva's head (as I'm sure they are) then it makes complete sense now as to why she ignores me or answers in a strange way then grins to herself. 
If we had another child then I'm sure I'd know these things but with Eva as our only experience in this it's been a revelation.
I learnt one other thing: I must stop forcing Eva to ride horses! I want her to like it, I know it's good for her (hippotherapy and all that) and have been making her ride them at markets, fairs and fetes since she was two and she has consistently disliked it. One of these days I will learn..



Thursday, September 6, 2012

Relinquishing a child

There was an incredibly moving forum broadcast on SBS Insight on Tuesday night (find the link by clicking here) called Breaking Point. It was about parents who have a profoundly disabled child that they have relinquished to the state - why it happened, what could have prevented it and how they feel and cope now.  During the broadcast facts and figures were on screen and one of them in particular caught my attention - The government spends around $270,000 per year on a child who is relinquished. Wow that is a lot of money.  The difference between that and what families receive (if anything) to assist with the costs of looking after their child at home is astounding. And it's one of the main reasons that families have given up their child: they have had so little support with in-home care that they have become depressed, broken and have nothing left to give. One family on the forum received no help at all despite requests.  Another received four hours of respite a week (equivalent to roughly $8,000 per year in government funding) - not even enough to catch up on one night of sleep.  Many of the families on the forum said if they'd received adequate help and respite from government services they wouldn't have had to relinquish their child but after years and years of little or no sleep and no break they were beyond breaking point - relinquishment was the only option to keep themselves sane and keep the rest of their family together. For families who have children who require around-the-clock care the chance to have just one unbroken night's sleep is impossible without outside intervention of respite. The cost to pay for it privately is completely prohibitive if you have had to rely on a government pension which many do as they can no longer work due to the constant care of their child.  Parents of newborns are privy to the experience of night after night of very little sleep but these parents experience it night after night for decades. Long-term sleep-deprivation is linked to many adverse health conditions.  Along with being too exhausted to fight and stand up for rights for your family and child, feelings of grief, helplessness and anger can be just as damaging to health and wellbeing.
What a very sad situation that even with families begging for assistance and pleading for changes to the way the system works, it is still totally and utterly broken. But at least some states are making progress on changing that using the Australian Government's recommendations as outlined in the Productivity Commission Report on Disability Care and Support that recommends an Australia-wide National Disability Insurance Scheme. However my local state government has completely ignored it.  They have instead launched their own initiative which will (yet again) direct time, money and training into another new system instead of using those funds to implement what was recommended.
What a sham.

Tuesday, September 4, 2012

We did it!

We made it! We all managed to finish the fun-run and we raised the money needed for Eva's chair for school next year! Some of us did it in exceptional time - 45 minutes was the fastest and I came in last of our team at 73 minutes - but we all ran the whole way, we all finished and were on a high for hours.  Those of us who made it to breakfast afterwards scoffed much bacon, eggs and coffee at Sisco and felt very proud of ourselves. Well done Team! 

Here we are, plus friends, after our breakfast feast! Thank you everyone!

Saturday, September 1, 2012

Running for a chair

In less than 8 hours I'll be waking at 4.15am to have a quick coffee and warm-up before doing a 10km fun-run.  We are doing this fun-run to raise money to buy a chair.  Weird huh, to run for a chair. The chair we are running for though is for Eva to use at school next year and despite it's simple look it is complex and multi-functional.  It is also very simple to use - something I thought was very important given the number of teachers, aides and carers she will have helping her along the way.  Simplicity is certainly not a given with disability equipment! This chair is going to set us back close to $5,000. And I hate that we can't afford it and that we have to fundraise for it.  It's not something that sits well with me as a parent and especially as a proud-part-Scottish-parent. And I wish that I could just focus entirely on fundraising for Rett syndrome research. But quite frankly we would be beyond destitute if we had to pay for everything Eva needs.  It's kind of outrageous when you price it all up.  It's not like saving for a couple of weeks to get your child a trike for their birthday that might set you back $200. For us a similar trike for Eva that has the supports she needs to ride it will set me back US$3,400. And that price escalates to at least twice that when you buy it in Australia. Anything related to disability seems to have a few extra 00's on the end of the price.
And I don't want to rant too much here (cos I need to keep my heart rate nice and low for tomorrow!) but when I explained the cost of equipment to our Premier a couple of weeks ago he had no idea whatsoever at the costs endured year after year after year. Most friends and family assume that people with disabilities are well-provided for by the government. Heck I thought so too until Eva came along. While I think we live a pretty awesome life compared to so many in the world I have to remember to compare myself to my peers:  A chair for a baby to sit in the bath when they are young is about $50.  A chair for Eva to sit in in the bath so she doesn't topple over (and preventing us from tearing back muscles through holding her upright) cost us $700.  Then there's wheelchairs, hoists, electric beds and many other pieces of equipment that don't seem that necessary until you've lifted, showered, changed, dressed and fed a child who gets heavier month after month. 
And that is why we needed support to buy this chair - in our case it really does take a village to (fund)raise a child!
So to all the lovely people who have helped us fundraise for this chair by either joining our running team or sponsoring a runner, I send you a very big THANK YOU!! We have a 12-strong team running tomorrow and have raised close to what we need for the chair. Yay!  We'll be thinking of you as we see the sun rise and pound the pavement. And Eva will get to go to school next year in a supportive chair that will keep her body upright so she can be free to concentrate on learning.
Thank you :)

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.