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, 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.