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, December 23, 2014

you are too blessed to be stressed.

This is a phrase on a friend's facebook page and I think of it often.  It brings me back to a position of feeling grateful instead of feeling entitled.  And it's been a rough few weeks around the world - the siege in Sydney, hundreds of children murdered in Pakistan, more children murdered in North Qld.. it's a harrowing, emotional time.  But being stressed about it does nothing and real action takes time and effort.  In a world away, my world here with Eva my little dramas and stresses seem frivolous but it all adds up.  Being kind and compassionate and taking time and effort in my own life can ripple out to the bigger world little by little...


So I'm sitting writing this in my kitchen, berry muffins baking in the oven (vegan - recipe below), stardust radio playing beautiful old hits and having a quiet little weep, for my own little drama.  It often gets me this time of year... we go to parties, we catch up with friends we haven't seen for ages and the chasm that is Eva's social life that I manage to teeter across throughout the year widens and swallows me up.

I suddenly see her through other's eyes.  Through the eyes of children who ignore her or just have no idea how to approach her, of adults who don't know what to say or how to say it.  Of the stares, the sad eyes, the ignorance.  

I so desperately just want her to be seen, to be included and to be adored the way we adore her, to be talked to like we talk to her, to have her sense of humour shine the way we see it shine.  I know all parents want this, I know I'm not alone here.  But with a child who can't walk up and spin a line or tell a joke or twirl a whirl, it's desperately lonely in the field of social life.  I sometimes think it's totally up to me to approach people and teach them how to communicate with Eva.  But you know in the last 7 years it's been a very rare occurrence that someone has asked me how to communicate with Eva, even to say hello or how are you.  And yet it's really not that hard!  But it does take one major thing - commitment.  In fact for anyone reading this who doesn't know, here's my personal how-to on approaching Eva or even any child who is in a wheelchair and doesn't appear to communicate verbally:

1.  Get on her level
2. Talk at a normal pace and tone with age-appropriate language.
3. Say hello
4. Wait for a response - it might be the quickest glance, a small smile, a leg kick or nothing.

5. If you don't get one, don't give up.  Remember this is not about you. At this very moment she might have a headache, a pain in the tummy or be desperate to go to the toilet but hasn't had anyone ask her if she needs to go so she's sitting there in total agony! She might have an itchy bite on her neck but she can't ask to have it scratched or reach around and do it herself. There might be a million reasons why you're not getting her total attention to begin with and it almost certainly isn't about you.
It is about giving her a chance to have a conversation.  Maybe her carer or parent will step in here and help you learn how to talk to her or..

6. Ask her parent/carer how she communicates and ask to have access to that book/ipad/notebook or whatever.
7. Then ask a fun question - examples-  Are you looking forward to Christmas?  Do you like getting presents?  Do you think Santa knows what you want?  Do you like chocolate?  Have you got any cats or dogs?  I mean really the list here is pretty endless - anything that shows you are not only willing to take the time to ask but will stick around to get a reply.
8. Don't rush
9. Don't start another conversation whilst waiting for a reply 
10.  Refuse to allow yourself to be interrupted by others.  This is quite possibly the only time that this little person is being spoken to respectfully by an adult - honour it.
11.  If you don't get an answer tell them a little bit about what your response to the question would be.  Let them see you're up for a chat.
12. Simmer... let the conversation wallow a little, see what's happening.  Maybe you two can talk more or maybe you can leave it at that and know that you've given it a red-hot go.
13.  But if this all seems too hard then don't even bother to start because you'll be breaking two hearts if you can't commit: hers mostly, but mine too.

And if you have children - talk to them honestly, openly and bravely about what it might be like to not have a voice, to not have the ability to run around and laugh and play with the others and how taking time to talk and include isn't about being a better person it's just about being a real person.  A real loving person.  A real loving person committed to loving and learning about people from all walks of life.

I live in hope.  And yes, I'm too blessed to be stressed.


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Mixed berry muffins - vegan : dairy and wheat and egg free - makes approx 12.

1 1/2 cups spelt flour
2/3 cup organic sugar
1 tsp baking soda
1 tsp baking powder
1/2 tsp salt

1 cup soy milk
1 tsp apple cider vinegar / plain vinegar
1 tsp vanilla
1/3 cup oil

1 ripe banana
1/2 - 2/3 cup mixed berries

Whisk together the milk and vinegar and set aside.  Whisk together all the dry ingredients and create a well in the middle.  Mash the banana and add it to the soy milk with the vanilla, oil and berries.  Mix through.  Add to the dry ingredients and mix thoroughly.

Spoon into muffin tins and bake at 180 degrees celsius for about 20 minutes or until cooked through.

Enjoy!

Wednesday, November 26, 2014

Learning to breathe...

It's been a big month.  Actually it's been a big year... maybe year and a half.  I look back and see I've made very few posts since Eva started school and it's hardly surprising.  The concept of time has taken on new meaning with all the to-ing and fro-ing to school, appointments and therapies.  But this last month has been especially crazy.  I went to China for a job, my dad ended up in Intensive Care after a bit of a mishap during a routine sinus surgery, my very dear Grandmother died, my sister and her family arrived from Scotland for a holiday and my mum went to Emergency for trouble breathing.  And we moved house.  Again.  5 houses in 5 years..this time with incredibly stressful altercations with the landlord.  Certainly the most unpleasant house move ever. There must be some kind of record for that.  Through it all Eva has remained quite healthy, unstressed and actually quite happy.  And I have coped much better than I thought I would.  I can only attribute it to both her and I finally practicing what I preach which lately has been all about breathing.

Back when Eva was having crying episodes (rett and gut related) I used to use a yogic breath called Ujjayi breath to help calm her.  Sounding like the ocean (or Darth Vader) with a slight throat constriction, it worked a treat and the brilliant side effect was that it would calm me too.  This year I've been studying yoga formally to get qualifications as a yoga teacher and have learnt about all the physical and mental benefits of this breath along with many others. I started teaching Eva some of the breathing techniques to help her with anxiety and found it had the most amazing results.  There were times she would disengage from conversation, get wide-eyed, starey and look quite scared and anxious and end up having jerky kind of Rett-shakes.  When I started talking her through it : "breathe nice and slowly, breathe through your nose, breathe calmly and quietly, slow it down, in through your nose and out through your nose, you're in control" she stopped having the shakes and would just come back to her normal self.  It has worked so often and so well that now if we see her starting to look anxious we just cue her to take control of her breath and that seems to work as a reminder.

So when all the hullabaloo of the last month surfaced I took my own advice and breathed slowly and calmly, slowed my breath down and took control of it.  And the amazing thing is that it created stillness in my self that left me feeling ok despite the chaos that raged around me. Ujjayi breath is known as the breath that soothes the soul, calms the mind and nervous system and brings the chatter of the mind into balance. It's certainly done that in the last month.

Monday, September 8, 2014

Lists

I was cleaning up my bookshelf over the weekend and found a list I'd written tucked inside a book.  It was a list of all the things I needed to be doing with Eva back when she was still a baby/toddler and having motor co-ordination issues.  It filled me with such nostalgia and sadness seeing how I'd furiously written this list of things I must do with her each day to help her catch up with her peers.  "Grasp toys and place in bowl, hand-over-hand spoon to mouth and back in bowl, rolling practice, push up to sitting practice, making sounds together and repeating..." It took me back to those days when I was so sure she was just a bit slow because of her eczema but that she would eventually catch up and everything would be ok.

If only I'd known she had the beginnings of Rett syndrome...  I could have been a lot more gentle with myself if I'd known that we'd still be doing those excercises 6 years later and still making such little progress that it's easier to measure our success in patience than in achievement.

I look back at that new mother I was and wish I could take her aside and tell her it's not going to be ok all the time, but it will be alright.  That the excercises are important but not worth the guilt when we forget to do them or when I abandon them because Eva seems to just not care or even try.

I wonder what lists I'll find down the track and what I'll want to say to my current self in another 6 years time...


Tuesday, August 26, 2014

School .

This is one subject I could talk endlessly about and bore most people to tears.  I have found school the most challenging thing since our diagnosis of Rett syndrome.  How's that! Dealing with all that Rett throws up and still it's the education of Eva that confounds/irritates/offends/frustrates me the most.  Despite all the patience I've acquired thanks to those years of waiting in hospitals and therapy waiting rooms...

Sending a child to a mainstream school who is in a wheelchair, who can't use her hands, can't vocalise more than baby-sounding sounds for words (and very infrequently) and uses eye-gaze to communicate is nothing short of tricky.  We "assessed" a few schools and felt the full force of back-handed discrimination before choosing where we ended up.  The phrase "You may find you're better supported at such-and-such a school" was regular and annoying.  We finally found a school that seemed to be welcoming and inclusive.  But even now, after a great year of Prep, the challenges of being in a mainstream school sometimes feel insurmountable.

We know (in that deep solid 'only-a-parent-can' kind of know) that little miss Eva is a smart cookie.  But we also get solid proof - just not as often or as easily as her teachers might like.  She loves maths and can eye-gaze the answers to sums super fast.  But only when it's 1 minute after the bell has rung and she's been threatened that there'll be no playtime until she answers. Then she does it.  So that's her attitude and I get that.  But why does she keep doing it?  Even when we've asked her not to?  She answers incrediby challenging questions that her speeth therapist throws at her and doesn't have to be bribed or bullied to do it.  I can only surmise that Eva doesn't believe that her educators really and truly believe she is smart so she gets bored and will only work when she has to.

I think that she isn't extended enough at school and have mentioned it a few times but every time I do I get the faint feeling that I'm being an annoying helicopter parent.  Eva also loves to read and will read and answer comprehension questions to about 80% accuracy.  I've asked for her to go up a reading level but am told she needs to answer the inferential question to 100% before that can happen.  Some books she does, some books she doesn't.  It makes me wonder whether there are options for her to change her mind if she chooses the wrong answer to begin with.  So many aspects of her abilities can potentially be hindered by her communication partner.  I feel like she's being held back... but why.

The school is stretched for staff and I'm sure does their best to give her the time she needs when she needs it whilst still looking after all the other kids that need help.  I wish that there was a way I could download all I know that Eva knows into their brains so they stop trying to make her prove what she knows over and over again.

With all the frustrations I experience (and that Eva definitely experiences) there is the beautiful redeeming shining light that is the interaction and friendship she's developing with her classmates.  She recently had a birthday and this little card turned up on her desk from one of her friends.  Makes all the shitty serious stuff seem doable when I read treasures like this.





Monday, May 26, 2014

Holiday love

It's been so long since I've written anything here for a few reasons - school, life, rett syndrome and my return to study being some of them... I've thought of catching up on the last year then been daunted by how much I want to write. I've had this sitting unfinished since September last year. .. so here it is.

Last year was a year of firsts in many ways - new school, new friends.  One of our very exciting firsts as a family was to go on a camping trip to a remote-ish part of the Australian coast.  We took so much stuff we didn't need but felt we had to take just in case Eva needed it and we took a trailer load of gourmet food and wine which we really clearly did need.

The place was gorgeous and filled us with the kind of peace that only nature can induce.  We were right on the beach and had the open sea in front of us and hills behind where the sun would set and cast a pinky-orange glow over the sea mist.  There were kangaroos that would nibble on flowers around the camp then bound along the sand as the sun rose over the water and had us feeling like we were in a Qantas ad.  Eva had a great time, we had a great time.

Eva's very special friends miss G and mr R, that she has known since she was born, were with us too and their mum and I watched entranced as they made up games during the days.  It often took the form of Eva being "The Queen of the such-and-such"(ocean, palm tree fairies, beach etc) sitting in her wheelchair-throne adorned with flowers and leaves and beach detritus while G and R were the royal mermaids or the royal jellyfish or just naughty royals who climbed trees while the Queen sat and watched them.  They both got the hang of using Eva's communication book to ask Eva questions and when we lost it one morning miss G was super quick to craft one up within a few minutes using what she could find - a green sticker for YES and a red pom-pom for NO.  Eva loved it and it quickly became the favoured communication board for the kids.

We had been so scared of doing this camping thing because of all the what-if's which although quite reasonable, just stopped us from having an experience that was enriching for us all.  From worrying about Eva's health to worrying about how she'd sleep and whether she'd be ok with the kids running around while she was in her chair... so  many worries...  so so happy we just did it.

In fact we went again at Easter.




miss G with the awesome crafted-up yes/no board

sunrise from the campsite