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, June 2, 2015

Dental rant

I just have to say that there are times I think someone somewhere is having a big fat laugh at how much people with disabilities (and their families) will put up with.  A few months back Eva had a dental check-up and it was recommended that she see a Paediatric dentist as our family dentist felt unsure about how to best deal with doing a filling that she needed.  So I innocently went along to this new guy and filled in all the forms and sat with Eva, ready for her to have a thorough check up and to find out what would happen for her to get a filling.  For a small fortune he gave a cursory look in her mouth (really quite cursory and noticed only one of two fillings that needed to be done), barely spoke to her at all and proceeded to inform me of the need for her to have a crown done while under a general anaesthetic in a hospital.  Now I'm not a big fan of any of the things he mentioned - GA's, hospitals, dentistry and hang on a minute -a crown??!!  On a baby tooth that just needs a filling?  His response to my queries were so calculated to tug on any residual motherly guilt - how could I deny my child a safe and sturdy crown when a filling could so easily crack or lead to further complications and a need for further dentistry under another general anaesthetic.  Better to be super safe than super sorry.  He shone his perfect white teeth at me as he suggested what he believed was in Eva's best interest.
And then I got taken to another room and shown the quote.
$2500.00 AUD minimum.
What the heck?  Eva doesn't gag, isn't tube fed, can breathe normally, doesn't have seizures and is on no medications other than anti-reflux and yet she can't get a flipping filling for under $2500?
So I walked out of that place and didn't go back.  But I have spent time and more money on getting second opinions and it seems that unless I find a dentist willing to risk their insurance then I will need to either wait for her to get a public appointment or cough up the money.
Really not funny.



Friday, March 13, 2015

Bad attitude, Bad sleep, Bad breath

What a combo.

These are all the things that eventually added up to me realising Eva was having a bout of reflux.  Amazing how something that seems like it would be so obvious was so hard to figure out.  Those first few weeks of school she must have been truly suffering - not just with nerves but the acid too.  Poor kid.

Within 2 days of starting Losec Omeprazole Eva was sleeping better, eating better, drooling less, had normal smelling breath, was staying awake in class more and was HAPPY.

And boy did that make me happy too.

Sunday, February 1, 2015

the edge

There's this phrase in yoga about 'coming to your edge'.  You come to a point where you can feel the stretch, maybe even feel a bit of a burn but it's not causing you any pain and you can make the decision to go further or back off depending on how you're feeling.  Anyway, I came to my edge this week and possibly pulled a muscle. Figuratively.
Eva started a new school, a new year (Grade 2) and I was with her every day in the first week helping her aides get to know her and to help out if anything needed sorting.  The first day was probably as scary for me as it was for Eva.  I felt like a kid again - wondering if the kids in her class would like her, wondering if she'd make friends, be ok at lunchtime, hoping she would look up, smile and participate. It was excruciating.  I'm so glad I'm not a kid anymore!

The first two days of school were so so hard.  I found myself getting frustrated with Eva for flopping forward, disengaging, ignoring and just not participating in any way.  She has been so amazingly engaged and upright all summer that I just couldn't believe what I was seeing! I assumed it was shyness or problems with her wheelchair straps.  Then we'd get home from school and she'd sit up straight in her chair at home and chat away to me using eye gaze and verbal responses.  I was stumped to begin with. At the start of her second day I said to her that if she tried really hard we would have some chocolate cake for afternoon tea.  But her second day was a disaster - she looked at anywhere except at her whiteboard, she refused to answer questions, she flopped in her chair and ignored the girls in her class who were trying to befriend her.  My patience was worn thin at the end of the day - I was thoroughly sick of asking her to sit up, asking her to please listen and answer a question and asking her to please look at the person who was talking to her.  I felt like shipping her off to a boarding school I was so annoyed! So when we got home I asked her "do you think you tried hard at school toady?" and she looked at "no".  I said "So do you think you deserve some chocolate cake?" And Eva looked at "no" on her whiteboard, then she smiled this smug smile at me and looked at "maybe".  I could have throttled her!  I am not just dealing with a child with Rett syndrome, I am dealing with an annoying typical 7 year old!

All this time I've been giving her the benefit of the doubt; assuming she was tired/in pain/ shy/ overwhelmed/ scared/ frustrated etc when really she's just been playing me like a well-worn fiddle. So that was when I realised that the girl I saw through the lens of Rett syndrome was also a typical kid who would do anything to not have to be at school and work hard.
And so I became the parent I guess I might have always been - I ranted at her. I told her that she was being lazy and that she was lucky to have such a lovely school to go to.  I told her that if she didn't try harder that the school might write and tell me she doesn't belong there and that would be her fault for not trying.  I was relentless and probably a little bit over the top.  But she listened.  And on Thursday she was nothing short of amazing - sat upright, smiled, was attentive and engaged, friendly and listened during class.  I was so impressed. And really happy that she was giving her new friends a chance and showing the new school who she really was.  I was also giving myself a bit of a pat on the back for figuring it all out.
But that was premature because on Friday she fell back into being floppy and disengaged.
I don't know whether I should put on my typical 7 year old hat or my Rett hat. Was Eva tired after the mammoth effort she'd put in on Thursday and was basically mitochondrially deficient (is that a real thing?) or was she being lazy again?  I have no idea.

And that there is the conundrum of having a typical yet totally un-typical child.  I can't get answers easily, I have to intuit a lot of what is going on and I have to be aware that every effort she makes is potentially very hard for her.
In a way I'm really glad she's brought me to a new edge: to understanding what it's like to be the parent of a regular 7 year old. On the other hand it's just a whole lot of new hard work and if I don't pull some kind of patience muscle by the end of the week I'll be surprised.


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.


***   ***   ***   ***  ***   ***   ***   ***   ***   ***   ***  ***   ***   ***   ***   ***   ***   ***  

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

Friday, September 27, 2013

Uniquely Eva

A couple of weeks ago Eva was asked to come to a party in her favourite dress-ups.  After some time of me holding up a variety of outfits this was chosen (top to bottom) by Eva.  I particularly loved her Cinderella "slippers".  Perfect for a quick getaway from potential princes.



Then Cinderella had a vegan chocolate cupcake (I absolutely LOVE it when she can eat at least one awesome party food!) and was clearly pretty proud of herself for demolishing it in such ladylike style.




And here's the link for the vegan chocolate cake.  It really is as easy as it looks and tastes brilliant.  We used ghee instead of oil or butter in both the cake and the icing:  www.instructables.com/id/The-BEST-chococlate-cake-ever...that-happens-to-be/

Tuesday, September 24, 2013

Almond meal cakes and other things

I've neglected this blog and I'm now feeling pretty rusty at writing...  A few days after my almond milk post we had to take Eva to hospital with asthma that then turned rapidly and dramatically into pneumonia.  She stayed in hospital for a week then had another week at home and next thing I know it's the end of school term and I've not written a thing for 2 months.  

So, if you have any almond meal still in your fridge from then - aaaagggghhhhhh!!!! Get rid of it immediately!

Here however is a lovely cake recipe for the wet almond meal leftover next time you make almond milk.  I've adapted it to Eva's tastes and there are a few variations at the bottom that we used as school morning tea cakes.


Lemon Almond Meal Cake
egg free, can be dairy free, can be gluten free.

2 tablespoons lemon juice + soy milk = 1 cup milk
1/2 - 1 cup wet almond meal
1 1/4 cup spelt flour (or whatever flour you like but NOT coconut flour)
1 tsp baking powder
3/4 tsp bicarb soda
1/4 tsp salt
1 cup sugar (brown or white - whatever you like/have)
1 tsp vanilla extract
1/3 cup oil (grapeseed, olive, almond, coconut or mix of all three OR ghee)
3 tbsp lemon zest

Prepare the milk and lemon juice and set aside to thicken.  Put all the dry ingredients together in a bowl - almond meal, flour, baking powder and soda, salt, sugar - and mix through.  Wet almond meal won't mix well but that's ok.  
Add all the rest of the ingredients - lemon zest, vanilla, oil/ghee, milk and stir thoroughly to make sure the flour and almond meal is mixed in.

Pour into a tin lined with baking paper and bake at 180 degrees celsius for between 30-60.  Now I'm no pro recipe-tester so I can't give you a definite time but check it every 5 minutes from 30 mins on - quickly and with a skewer.  If the skewer is clean when it comes out then cook it an extra 5 minutes and let rest in the tin for ten minutes before cooling completely.

Extra almond meal makes the cake more damp and takes longer to cook.  Adding fruit makes it take a bit longer to cook too.  I've had one spectacular fail with this recipe (I did it without the recipe and forgot sugar and cooked it way less than it should have) but the rest have been awesome.  They aren't big fluffy cakes but they're yummy, they're wholesome and  what counts the most is that my little girl can eat them and loves them!


Options:

Ditch the lemon zest, reduce the sugar to 1/2 cup and add a handful of chopped strawberries, a handful of desiccated coconut and a mashed ripe banana.  Great for school morning teas. 

Or ditch the lemon zest and add 1/3 cup cacao and 1/3 cup desiccated coconut.  Ice it with chocolate coconut icing. (1 cup Icing sugar, 2 tbsp cacao, 2 tbsp desiccated coconut, 1 tsp vanilla essence, 1 tbsp coconut oil, teensy amount hot water to mix it all in).

Or ditch the lemon zest, use dark brown sugar only and add 2 tsp ground cinnamon, 1 tsp ground cardamon, 1/2 tsp ground cloves, 1/2 tsp ground ginger.







see the bit of white? that's some almond meal i didn't mix in properly. tasted fine!