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.


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!








Thursday, July 18, 2013

How to make Homemade Almond Milk - a step-by-step guide

Homemade almond milk: one of the easiest things I put off doing for years.  And I'll never buy it again.  It's a 15 minute process, a bit messy until you get used to how to do it, but simple, cheap and has a gratifying level of i-made-it-myself smugness.

My next post will have some recipes for cakes that use the leftover almond meal.  So don't throw it away!


1. Buy your almonds in bulk to save time and money.  Store them in a sealed jar to keep moths out.  Buy organic almonds if you can because lets face it, our girls have enough going on internally without asking their liver to process loads of chemicals as well.  If you can't buy organic then at least buy pesticide-free almonds.

2. Soak em!  Overnight (minimum 3 hours max 12 hours in a cool dark place) and covered with water.  Filter water is best, tap is fine but do not use hot water as you don't want the skins coming off.



3. Drain and rinse.


4. Pop them in a blender and cover with at least twice as much water.  Filtered water is best.


5. WHIZZZZZZZZZZ !!  I do mine on the ice level for about 2 minutes with a few stops between to let the almonds settle before re-whizzing.



6.  Pour the mix through a fine sieve into a jug or bowl (since taking these shots I've found a large bowl to be easiest and less messy)




7.  Press down on the almond mixture to get all the juice out.


8. Put the leftover bits of almond back in the blender and cover with water for a second whizz.



9.  Pour through the sieve again and when squeezed through put all the remainders aside in a bowl and then in the fridge.  This can be used in cakes, muffins or any recipe that calls for almond meal but has to be used within about 2 days.  It looks like this...


10.  Now get some cheesecloth and place it over the mouth of the container you'll store your almond milk in. Hold it in place with a rubber band. Mason jars or an old Passata bottle work well, just make sure it is thoroughly clean and dry. 



11.  Pour the milk through the cheesecloth....

 

you may have to help it through with a spoon...



Squeeze the last liquid out of the cheesecloth like you're milking a cow then store it in the fridge.  Add the bits of almond meal left inside the cheesecloth to your bowl in the fridge.



12. It should last about 3 days but you can check it by tasting it.  It starts to smell and taste sour when it's turning.  Enjoy!  



follow up

The last post seemed to make my family wonder if I was ok. I am in fact not only ok but very fine and really quite happy. I may not have a glass overflowing with freshly squeezed sunshine but I am definitely a glass half full! 
Maybe it's been such a long time between posts that my writing was a bit off kilter or something...  anyway the "happiness project" I've started after reading Gretchen Rubin's book of the same name (ok I've only read 2 chapters but it has started me off...) is just to make a few tweaks to my life to help me remain a glass half full, help me get my career back on track and maybe clean up a few unruly piles of crud in the process.

Tuesday, July 9, 2013

Trying, failing.

There are days that Rett syndrome doesn't bother me much.  It's there of course, lurking around, being the reason that Eva can't put on her own shoes or dress herself for school.  The same reason she can't play by herself while I do the cooking/washing/working/insert-whatever-I-do-alone here. But you know it's just part of daily life now.  Then there are days that it's just such a big fat PAIN. Every time I feel on top of it, something new happens. Scoliosis worsens or her shakes get worse or she's holding her breath.  There's a Rett syndrome handbook (brilliant, but big enough to concuss you) by Kathy Hunter that tells you most things you might need to know but of course there's constantly new research, new drugs, new possibilities of what might be causing new issues that I feel I have to, need to, read.  I often feel overwhelmed by what I don't yet know and wish I did.  I search the internet then wish I'd not.
And then there's the managing part of having a child with Rett syndrome, or for that matter any syndrome or disability.  Managing appointments, managing meetings about school or services... managing to look like I'm keeping it all together.
I'm pretty sure I keep it together most of the time.  But after a very revealing discussion with Eva's dad I realise that my sunny outlook on life has slowly been clouded over the years.  It's not surprising of course.  But I don't like it.  And now that I realise it, I want to do something about it.  Unlike Rett syndrome it is something I can fix all on my own.

Friday, June 7, 2013

irked

Today I got a phone call from the Guidance Officer at Eva's school.  She explained to me that she looks after the children with disabilities and also any funding for kids with additional needs.  I naturally assumed she'd want to discuss Eva's teacher aide hours and get me to fill in some forms for securing funding.  But no.  She told me that she'd spoken to Eva's class teacher and Eva's Special Ed teacher about Eva. Hmmm ... My internal radar pricked up. She then asked me where Eva would be going to school next year.  Huh?! Eva is actually currently enrolled at the school and in my mind of course would be staying there.
I think any parent who heard that their child's teacher had been spoken to and was now being asked where they were planning to go to school the following year would surely be immediately concerned that their child had done something wrong or was in great trouble and not so subtly being asked to leave.
I responded that Eva was currently enrolled and happy at the school she was at. Her reply was that Eva's high needs meant that I may like to consider a Special School for her and was that something she could help with.  My reply, too lengthy to include here gave her the answer she needed.  A definite no. But the damage of subtle discrimination is done. I have become so used to this over the last few years that these kind of insults just make me a bit cranky. But what about other parents for whom this is a new kind of experience and get sidelined by these kinds of comments.  I know I can't make everything ok for everybody but it irks me so much that parents who work so hard to get their child into a mainstream school have to constantly be reminded that theirs is not a position of surety.
The Guidance Officer could have just as easily rung and said "I'm finalising enrolments for next year and wondering whether Eva will be attending Grade One?"
Simple. Effective.
 

Thursday, May 23, 2013

Losing the Trifecta

I feel very lucky to be able to call my doctor-sister to ask her to come over and check on Eva when she's sick. She's been living overseas for the last 3 1/2 years and we had survived without having her around but what a relief now to have her so close.  Being a Paediatric Emergency Specialist, she is used to serious life-threatening cases and I sometimes feel like I shouldn't worry her with trivial things like a cold/cough that's made Eva start breathing faster than usual.  But this morning I'm so glad I did.  Eva was struggling to breathe and it turns out she has suddenly developed asthma.  Considering the family history of allergies and asthma on one side and eczema on the other and considering she's already had eczema (severe for about a year) and has anaphylactic reactions to about 4 allergens it was, as my sister said, "some bizarre stroke of luck that she didn't already have asthma." Well I guess that luck ran out and the revolting trifecta is now complete.
What was most disconcerting was to hear her say I should have taken Eva to the hospital well before she got there.  I had asthma as a child and I remember the horrible feeling of not being able to breathe properly; feeling like I was breathing through a narrow straw.  Courtesy of my sis I now have a "Wheeze Action Plan" that I can add to my "Anaphylaxis plan" and my mental list of "What is Rett syndrome stuff and what is just being a kid".  I'm also now acutely aware of when I need to go straight to the hospital.
Naturally (being me) I spent a good part of the day feeling guilty that I hadn't done something sooner then a good part of the day feeling guilty that I was thinking to myself 'Oh just great, here's one more thing to add to the list of her pills and potions and one more anxiety I have about her.' Can't win.
Eva however is significantly improved and by this afternoon was sitting up in bed watching Sesame Street with just a wheezy little giggle now and then.

Monday, May 13, 2013

A milestone

 Eva lost her first tooth last week and it was finally a milestone she could share with everyone else.  She grinned happily for the camera which is something that doesn't happen too often.  The tooth is missing but the tooth fairy still came and so Eva's grinning continues as she shows family and friends her missing tooth and answers the obligatory questions about whether the tooth fairy came and how much she left etc.  Having had so few 'normal' milestones to share over the years I think we are both finding it sweet.






Wednesday, May 8, 2013

"I don't know why it works, it just does"

This is what an American doctor says about healing a rotator cuff injury with yoga.  I've been listening to his podcast about the benefits of yoga for healing because I'm yet again in pain.  It seems to be an all too common problem at the moment in our family.  First it was my knee, then Roger's shoulder, then my back, then his shoulder and now my shoulder and his knee!  It sounds like we are frail and yet the opposite is true.  We both exercise, stretch, do weights, meditate when we can and eat as healthily as possible most of the time. But lifting, moving, adjusting, turning and hauling a 17kg child on a daily basis will do that to you. And Eva is such a solid weight with little muscle strength to help us with transitions. "Stop flopping Eva!" is a useless phrase on high-rotation in our household.

So after spending time and money seeing a physio for this and finding that my shoulder was still so sore I did some research online and found Dr Loren Fishman's answer to a rotator cuff injury. And it's to do a headstand!  Being no stranger to yoga I'm intrigued and I'm going to try it, so I'll update this down the track and hopefully be able to say "I don't know why it works, it just does."

Here are the articles for anyone either interested or sceptical or sore!

http://www.newswise.com/articles/view/576365/?sc=dwhn

http://journals.lww.com/topicsingeriatricrehabilitation/Abstract/2011/04000/Yoga_Based_Maneuver_Effectively_Treats_Rotator.10.aspx

And there is a podcast of the interview with Dr Fishman on this link:
http://www.peoplespharmacy.com/2012/11/26/yoga-headstand-soothes-shoulder-pain/

Sunday, May 5, 2013

Inadvertent therapy - Pesto

Last weekend we were given a huge bunch of basil and decided to make pesto.  Eva was in a great mood, seemed keen to help and as we were doing the hand-over-hand task of pulling all the leaves off I realised what a great therapy tool it was.  Not only were we doing something useful but it smelled wonderful and was going to be tasty at the end.  Eva helped pull the leaves off, drop them in a colander then held the stick blender and pressed the button to blend it. And she enjoyed it!



I'm almost 5 years into doing therapy with Eva and I have to say I find it pretty boring for the most part.   It feels like a job.  I mean really, if you had extreme difficulty holding anything would you enjoy doing a therapy task that involves picking up coloured balls and dropping them in a box?  No wonder I spent the early years of Eva's life feeling simultaneously frustrated that the tasks were so boringly difficult and then guilty when I made her do them.

Cooking however seems like a brilliant way to incorporate sensory therapy, occupational therapy, fine motor skills, science (changing one thing into another through cooking it) and a healthy dose of fun that ends in a meal.  And since I actually enjoy cooking as well it seems to me the best way to ensure therapy gets done without it feeling like therapy. For both of us.

So here is Eva's dairy-free pesto recipe.  As you can see she was pretty happy with the result.

Double quantities as per basil available... add fresh kale too for a zesty kick!


1 cup basil leaves (firmly pressed in)
1/2 cup olive oil
30-40 grams lightly toasted pine nuts
2 small cloves fresh garlic
salt

Add all ingredients to a blender or use a stick blender to make a fine paste. Enjoy on everything!