A Seizure.....or Not?

I'm really struggling to keep up with my blogging at the moment.  With Steven away at college for the last 5 months and only home on weekends.....finding time to just sit, reflect and write is a little difficult.  In 4 more weeks it will all be over and we begin again to find a new normal.

But tonight I really feel that need to write and try to work something out in my head....kind of like a sounding board I guess.  As you would know, Ayla started having seizures back at the beginning of August.....or did she?  Finally tonight I have had a phone call from her neurologist in Queensland.  He's been a little difficult to get hold of due to giving up private practice and now only practising through the public hospital system.  That pretty much explains it....we all know how hard it is to get a message through that system!  I spoke to his Registrar last Thursday and explained to her what was going on and today I sent through a couple of videos that we had taken of Ayla's 'seizures'.  The neurologist felt that what he was watching on the video was NOT technically a seizure.  Apart from the 2 seizures that we refer to as 'the big ones', Ayla doesn't experience that textbook irritability and crying post-seizure.  She just goes back to sleep and then when she wakes in the morning....it's like nothing happened....she's the same happy kid and is still progressing at a great rate of knots.

Soooooo.......if it looks like a duck and quacks like a duck.....how can it NOT be a duck???  Apparently, it CAN be something else....I'm just not sure what yet.

I guess the other thing that now bothers me is where to go from here.  I have a Paediatric Neurologist in QLD that I can't get in to see until October next year but whom both Steven and I respect greatly and I have a Paediatrician here in Canberra that I'm not really certain of.  There's no Paed Neurologist in Canberra and Westmead is a 4 hour drive away.  The Paediatrician jumped straight in and said 'Yep, seizure...here's her meds" and the Paediatric Neurologist says, "hmmm not so sure, are the meds working....No?  Well, there's your answer".  The Neurologist said that had we been up there he would have us do an EEG under sleep deprivation and if nothing showed he would wean Ayla from the meds and then monitor her without them.  The problem is....I don't think the Paediatrician is going to be jumping for joy when we go in there and say that our Neurologist suggests something else.  Can't say I blame him but in the end this is about Ayla not about his fragile ego.

I can tell you this.....if Ayla is going to continue having 'seizures' EVERY night whilst on the meds, I would much rather have the 'seizures' every night WITHOUT the meds.

Whacky Friggin Do!

I think I have hit the wall....so to speak.  Steven has been away since June (home on weekends) at college and I guess you could say that I have been doing the 'single-mum' thing since then.  No offense to all of you single mums.  I seriously take my hat off to you....I don't know how you do it without losing your mind at times.

I just woke up this morning and felt totally over it all.  I love my little girl more than life itself.  Looking at that photo, how could I not!  It's no understatement but neither is it an understatement that today....I'm over this gig.  I just need a couple of nights away with NO-ONE!  Just me.  Just 2 days of not being forced out of bed in the middle of the night and then having to follow that up with some ridiculous hour in the morning. Just 2 days of not having to think about or care for anyone but me.

The last few months have just been endless nappies, clothing changes, toilet training, meals, cleaning the kitchen a zillion times a day, washing, sleepless nights, early mornings, seizures, racing to get Ayla and myself ready in time in the morning, medications (don't even get me started here), therapy, food on the flippin floor, grocery shopping, lifting, lifting, lifting, feeding, slobber on my frickin face.  I know this just sounds like one almighty whinge fest but, you know......IT IS!  I'm tired and I need some R+R.  I'm going away this weekend for a whole 24 hours....whacky friggin do!  It's not nearly enough and trust me it won't be a restful 24 hours.

Steven finishes at the end of November and if I'm going to make it until then (intact) then I think I need a little something to look forward to.  I'm picturing a cheap little cottage by the sea.  Slow, late mornings, beach walks, knitting, reading, napping, eating, early nights, all night sleeps and wake up and do it all over again the next day.  I'm on to it.

ABR Workshop August 11, Improvement #2

I have just finished typing up an application for a grant so that we can continue to pay for Ayla's ABR therapy.  It's sometimes so hard to remain positive when you are constantly typing up applications that   highlight your daughter's disability....all for a miserly $2000 which she may not 'qualify' for.  This one asks that we nominate 1 or 2 areas of disability conditions that we intend to focus on in the treatment of our child and that this preferably be based on medical or therapist advice.....pffft.  We haven't found one medico or physical or occupational therapist that has supported us on our quest with ABR despite the clear proof of the improvements and progress made over the past three years!!  So...onwards and upwards I say.  It's likely that she won't receive the grant so I figure if I want a job done properly....I'm destined to do it myself.  With my Mum and Dad's help too.  With that in mind, I think it is time to share another improvement that was noted in Ayla's ABR comparison report for August 2011.

ABR Improvement #2

This photo was taken in November 2010.  You can see how perfectly straight Ayla's vertebral column is in this position....and you would think that was good right?  Nope.  This actually demonstrates that her vertebral column lacks flexibility due to the lack of 'space' between the vertebrae.

In this photo taken in August 2011, you can see that Ayla's vertebral column is finally starting to develop some flexibility with a clearly defined curve.  This means that the work that we have been doing on Ayla over the last 9 months has helped to increase the spacing between her vertebrae and thus increase flexibility.  Love the human body!  It can do some really amazing things with just a little help.


And slightly off topic....but I know you are possibly asking???   No, the seizures haven't stopped yet.  We are throwing everything we have at them but they are still there for now.  No, I still don't like them.  No, I'm still not getting much sleep.  But yes, I am coping with them a little better.  And yes, I'm going to have a party when they're gone :)

Stayed tuned for some photos from our fabulous day at Floriade!

The Power of Love and Support

It's almost 4 weeks since my baby girl had her first seizure.  I still don't like them...naturally.  Who could say that they like watching their child's body racked with spasms that they are powerless to control?  It's been an odd few weeks.  I've had feelings of fear.  Fear of the seizure, fear of the unknown and believe it or not there have been times when I have experienced fear of Ayla.  I know that sounds really quite strange but when you don't understand something and you don't know how it will show itself or when, then fear seems like a completely normal reaction.  Isn't that the way it goes with spiders and snakes??  We don't really understand a lot about them but we know they can bite and make us sick.  We just don't know when or how or what will set them off.  Doesn't seem so crazy now, does it?

I've experienced anger too.  Anger at the Polymicrogyria mainly.....ok, maybe a little anger at the universe too but that way no-one feels left out....it's all encompassing.  And along with anger always seems to be frustration.  Those two seem like pretty good buddies.

But then I look around at all of the amazing support that we have had.  I know you have all felt that you wanted to do something to help....but honestly, you couldn't.  Not physically anyway but we have felt your love and support and felt that you were all right there for us if we needed to call.  There were 3 things that picked me up off the floor.  My Mum (but you probably knew that!), a text from my cousin Bec, who managed to say all of the right things and support from somewhere that, although I knew they would be supportive, I didn't expect the level of support we received and I could never have imagined how that support was going to change my feelings and my reactions to a seizure.  That support came in the form of a 1 hour audio file from ABR's founder and Champion to hundreds of families of children with disability across the globe.  Leonid Blyum you are an amazing man.  You have created a therapy for our kids that truly works, you devote your life to bettering that therapy and bettering our kids lives and through your audio file for 'Team Ayla', I came to truly understand your depth of care for our kids and their families.

Leonid's audio file allayed my fears of seizures by helping me to understand them and to understand exactly what has been happening for Ayla in the lead up to her first seizure.  He reminded me that in reality, nothing has changed.  Yes, she's having seizures....but we always knew that it could be part of the picture.  But nothing has changed.  We are still her carer's (Professional Carer's, as Leonid likes to call us), she is still our child, she still needs help with absolutely everything.  The seizures just extend our role as carers.  Leonid also validated everything that Steven and I had put into place for Ayla.  We know Ayla better than anyone and although we were suddenly part of this crazy new world where we had little to no understanding, we still knew her best.  We took a few steps back, wound down all the craziness of our lives, encouraged rest and napping with Ayla, took some time off school and nurtured and nourished her.  Leonid confirmed our methods by saying that we needed to step back to 'baby time' with Ayla for a while.

So, in the last few weeks we have taken that dreaded but necessary step toward medication for Ayla but we haven't left it there.  I'm throwing absolutely everything I have at this sucker.  I've done my research and I'm treating Ayla as if she were any other patient that I see in the clinic.  I have put her on Anti-convulsant herbs, supplementing minerals that are known to be depleted during seizures and she has been on a new nutritional program (the GAPS diet) for almost 3 weeks now and she's thriving on it.  She loved her food before but now she LOVES her food!  In the last couple of days we have seen some really positive changes with Ayla's daynaps lengthening back toward her usual 2-3 hours (25 minutes was all she could do once the seizures started), the seizures are changing and even skipping a day here and there, and this morning....she slept in!!!  Let's hope she no longer feels the need to greet the birds as the waken each morning.  She's looking more rested and relaxed and is back up to mischief again.

Broken

It's been a really long week and a half.  I feel like my entire world has just crumbled in my hands.  My last post was so upbeat and full of excitement and yet just hours after posting it, we have been dashed against the rocks and set adrift.  I don't even know what to write......

Ayla's condition is known as Polymicrogyria and her 'version' of it is called Bilateral Frontal Polymicrogyria.  We have always known that seizures were a part of the symptom picture for around 80 - 90% of people who have this condition.....but she's 6 years old and never had a seizure.  We thought we were home free.  At least we hoped like crazy that she was.  And now all of that hope is gone.   So far she's had nine and despite having to go on Epilepsy medication they don't seem to be letting up yet.  Every damn night I watch my baby girl's brain rack her little body with spasms and turn her beautiful innocent giggle into something that is sinister and dirty somehow.

At the risk of sounding like a spoilt child......It's not fucking fair!  She already has so many struggles ahead of her.  It's not fair that she's forced to face this too.  She looks so frightened.  We're all frightened.  I feel like I'm either going to lose my beautiful happy girl to constant seizures or I'm going to lose her to strong medications that bomb her out and take away her laughter.

I know everyone says I'm strong but I don't want to be strong.  I want to scream and shout and yell and cry and tell the universe that it's not playing fair.  I want to swear and punch something.  I'm so over watching her constantly struggling.  I'm tired and I'm burnt out......and I'm broken.

ABR Workshop August 11, Improvement #1

We're back!  It has been a crazy busy weekend and I'm knackered....but we're back after a fabulous assessment and workshop.  Ayla has made really great progress with her structure and we seem to have gone to the 'next level' in her ABR journey.  I think we knew that might happen.  Ayla's decision to begin spontaneously standing up did kinda give it away.... The standing was the signal that her body had made enough structural changes to be able to achieve and maintain the standing and now it seems there is no stopping her!

To the naysayers out there that weren't sure if we were being ripped off!!  I am currently thumbing my nose at you all....in a polite manner, of course :)  There is ABSOLUTELY no way that Ayla would ever have achieved this without Advanced Biomechanical Rehabilitation and without the years of commitment and hard work, not just from myself and Steven doing the therapy, but from everyone who continually puts themselves out there crafting week after week, running market stalls, organising events and especially those of you who have made considerable and extremely generous donations to aid Ayla on her challenge.  You all know who you are....and we thank you from the very bottom of our hearts....and Ayla does too, from the tips of her little standing toes!

We have a whole new set of exercises to do so that we can consolidate Ayla's changes and begin making some new changes too.  There is still a very long way to go but standing up has definitely opened the way and made the idea of Ayla walking, much more than just a possibility.   There's even an exercise that might actually benefit me too (whilst doing it on Ayla, no less).

So, let's get on with the changes....

Ayla's Comparison Assessment started a little differently for us this time around.  We normally charge straight into the structural changes but this time I was given a little mini-workshop on "The Key Elements in Mobility".....yes, you read correctly.....MOBILITY!  See, I told you walking is on the map now.

Clearly, the 2 pictures below are not Ayla.  They are being used for demonstration purposes. And here is an extract from the mini-workshop....to help you understand what changes have been made in Ayla's structure that are now allowing her to stand up.

Functional mobility needs the integrity of the upper body and it requires the following prerequisites:

Integrity of pelvic girdle

Integrity of vertebral column

Integrity of shoulder girdle

Any compromise of the above factors would affect the walking performance.

Once the upper body is strong enough to hold by itself, both legs would then be able to act as pillars through which the ground reaction is transferred so that he/she is able to step on one leg and the trunk would not sink, tilt or twist and at the same time he/she is able to swing the other leg. 

Without these 3 factors, functional mobility would be at best compromised and the child has to resort to his motor intelligence to perform at best mediocre movements under all the constraints and deficiency. 

So, it seems Ayla now has the beginning of these 3 factors. 

Improvement #1
This picture was taken at the November 2010 workshop.

 You can see in the photo the way that Ayla slouches forward and to the right.  This used to be her regular sitting position and we have been quite concerned about her developing a nasty scoliosis.

And this is August 2011!  Sitting straight and tall....No Slouching forward or to the right!  She will still slouch a little when she's tired...but really, who doesn't?
The photo below was taken again in November 2010.

You will notice her slouching forward with quite a rounded spine.

And this is August 2011....Spine is much straighter and far less slouching.

Both of these improvements demonstrate that her vertebral column is strengthening and the photos taken from the front also demonstrate an undeniable improvement in the segmentation or division seen between her abdomen and her thorax.  Segmentation and division are important for being able to control and segregate the movements of the different areas of the body.....something that you and I take totally for granted.

There you have it....improvement #1 done and dusted.  I'll put up another soon.....

If you are a parent or carer of a child that you think ABR may help and you've been loitreing here for a little while....I know, I did it too ;)....feel free to contact me if you would like some more information.  Happy to help!

ABR Bound

We are ABR bound this Thursday.  It will be very interesting to see what progress Ayla's little body has made over the last 9 months.  With Ayla finally standing up on her own....I'm hoping for a fabulous report.

See you on the other side.....

Six

It has been a crazy busy week around here....all centred around Ayla's 6th Birthday.  First she stands just in time for it and then I've been running around like a crazy person all week trying to prepare for the biggest and best birthday EVER!  Leading up to her birthday I hadn't slept in 3 days.....mentally preparing everything and then for some reason dreaming of myself racing down slopes and gently winging my way back up mountains on chairlifts.....excited much?

But all the stress and sleepless nights were totally worth it.  In the words of Frankenstein...."I'm Alive!!"  :).....Let's start at the start.

Ayla's birthday didn't truly start until Daddy came home around 6 on Friday night.  Prior to that the only Birthday fun we had had was Mummy singing Happy Birthday (seemingly Marilyn Monroe style according to the video LOL). 

 Both Cuties...Ayla and the Birthday Beanie....by Mummy.

 
We spent the day baking and decorating a birthday cake and collecting 'stuff' for our snow trip.  And then finally Daddy came home!  The special birthday dinner was served up, presents were opened.....and then came CAKE!!  I would have to say that as far as Ayla was concerned this was my first Birthday Cake success.  We have had lots of great cakes but Ayla isn't really into the sweet things and it's always difficult to work out what she considers a treat.  This, apparently, was the cake she had been waiting for!!  She ate her serve, half of mine and then half of Steven's...and today she was most unimpressed when she was served lunch and not cake.

It's my version of Strawberry Shortcake.....Gluten free sponge cake, filled and smothered with a combination of sweet cheese filling, cream, strawberries (chopped, squished and 'sauced'), with crushed meringues all over.  The entire cake only (including filling) only had 1 cup of sugar....just perfect and I'm totally proud of myself.

But the real fun was to be had at the snow!  About a month ago I wrote a post about Disabled Wintersport Australia and how this group makes snow fun accessible for everyone.....and they didn't disappoint!  They have special equipment tailored to every ability and fabulously trained instructors for every child.  Ayla's instructor was Jordy and he was amazing with her.  Excited, playful, respectful and caring.  You could tell that he couldn't wait to get her up there.  I was a little concerned whether Ayla would enjoy it or not.  The last time we went to the snow it was blizzard like conditions and she didn't enjoy it.  She thought the best part of the day was lunch.  But this time, conditions were perfect and you could tell she was loving it by the way she was giggling and squealing.  Below is a short video and a selection of photos from the day.

Ayla's carer from school, Joan, also came with us yesterday so that we all had a bit of a break.  It meant that even Steven could go off for a little while and just hang out alone.  Having Joan there made everything so much easier.  Dressing a child in snow clothes isn't a simple thing but with 2 of us working on her it was a little more breezy.

To top the day off....I also had an amazingly fabulous time snowboarding.  There was a little worried person inside me that thought I was getting a bit old to get back on a snowboard after 7 years.  I honestly don't know what I was worried about!  It was almost like riding a bike...almost.  After a lesson, I picked it up much easier than I did the first time around and was soon going up and down the mountains fairly confidently....until I stacked it on a blue run :).  I think I'll stay within my abilities and stick with the green runs for a little while.  Yesterday I felt truly alive.  The past 8 weeks have been hard with Steven away and the last 2 weeks have had me feeling totally trapped.  School holidays have meant that I haven't been able to go to yoga or work during the week so I was starting to feel like a caged animal.  After Ayla's lesson had finished, I took some time to be totally selfish in order to refresh myself.  I hopped on that board and took off and apart from a couple of short 10 minute breaks to check in with Steven and Joan, I didn't come back until after 4pm....and you couldn't wipe the grin off my face!

I think I'll give Ayla's birthday 10/10 this year!

It's Milestone Time!!!

It's that time we all know and love.....well around here anyway.

Ta Daaaaaa!  The Little Mrs standing up all by herself! 

It's time to start a whole new level of child proofing :)  Thank you ABR!!!!!

A Lesson in 'No'

I don't know.....I don't think I won this battle!  LOL!  See what you think...

I know she understands the word 'NO'....because she pulls her hand back and looks at me when I say it.  Sometimes she even gives me an evil giggle (Steven witnessed this for the first time recently....Told you so!!!) 

I think recently we have started to see a whole different Ayla.  In fact, I think we are starting to see the '6 year old' Ayla, instead of the perpetual toddler.  She takes notice of everything, including watching one lone bird fly overhead until it's out of sight.  That might not sound like a whole lot of anything to some of you....but it's a pretty major step forward for Ayla.  It wasn't that long ago that we took an expensive family trip to Taronga Zoo, stood no more than 3 metres from an Elephant and still Ayla didn't see it.  She only saw the big picture that the elephant was a part of. 

We're getting there....

We Care and We Vote

Today I read an article by a woman who is her daughter's sole carer....for life.  I truly hope that I never reach the depths of despair that this lady has reached.  Please read this.....this is the life of the Carer.  There are tens of thousands of us living this harsh reality of Australia's 3rd world disability system.

We Care......And We Vote!!

An Anniversary in Images

Today is 1 year since my Dad, Ayla and myself drove into Canberra for the very first time.  One full turn of the seasons.  This is exciting to me....maybe not to anyone else.....but it makes me feel excited.  It has been a fabulous year full of really positive changes for all of us. 

Ayla is in a wonderful school where she is truly embraced.  That's what I always wanted for her.  I still can't believe that both the Principal and the Deputy Principal regularly visit Ayla's classroom just in time to watch her step into her classroom and cheer her on.  Steven is finally doing what we moved down here for in the first place....and seems to be loving it (except the study).  And I have found myself in a fabulous job within a family run health food store and I actually feel like a part of the family AND I'm doing what I always wanted....seeing patients at the Allergy Centre and within my own clinic at Power Living Canberra. 

There have been bike rides, walks, markets, a visit from family (and hopefully some friends will visit us soon too), little trips around the region and more trips to come.  Here's to another exciting year in the Nation's Capital.  Enjoy the pics....

Winter 2010

Spring 2010

Summer 2010/2011

Autumn 2011

And then back to winter again...

The 'R' Word

Lately, Steven and I have been discussing the 'R' word (you know....that Retard word) and it's uses and connotations a lot.  With Steven being at college, he's been in a position (on numerous occasions) where the term has been used by lecturers and students alike.  Whether to make a point, get a laugh or whatever.  Steven has been quite upset about it and has had many things to say to all of those involved....leading to inevitable discussions between us about picking your battles.

From my own position, as long as the term isn't used in a derogatory or malicious manner, and happens more as a slip of the tongue, I'm usually ok.  And Steven seems to be coming around to this opinion too.  Recently Robert Rummell-Hudson from Schuyler's Monster Blog has also been writing posts around the term and something he said confirmed my beliefs around 'picking your battles' (actually it was just one thing among a truly fabulous post).  He said, "There's a saying that if the only tool you have is a hammer, then every problem starts to look like a nail".  I don't know....it just resonates with me.

Anyway, I wanted to include a link to this particular post for you all to read.  I would love to hear your thoughts and comments on this topic but remember.......if you can't say it nicely, then don't bother saying it at all.  This isn't a forum for nastiness.

Snow Fun for EVERYONE!

This week I have spent a lot of time getting organised for a birthday snow trip for Ayla.  I have been wanting to get to the snow ever since the very first snow flake fell this season but felt the logistics of getting up there and getting back on a snowboard with Ayla in tow seemed like an insurmountable problem.....having no family/friends down here that we could employ for the day.  Then a Facebook friend of mine mentioned that the snowfields in New Zealand have disability programs and why couldn't Ayla have just as much fun on the snow as us???  Good question!!!  Why couldn't she.....insert sound of can of worms opening...... And here we have it!!!  A fabulous daytrip to the snow planned  for ALL of us to enjoy! 

For those of you in the disability world, here's what to do....

STEP 1:  Get your child or yourself a membership from Disabled Wintersport Australia.  New memberships for 1 year are $90.  Renewal is $67.50.  The membership is for any snowfield in Australia and gives the person with the disability 50% off their private lesson (that's what you have to book into), 50% off their lift pass AND gives their carer 50% of their lift pass too....and I believe the person with the disability gets 50% of any purchases in the snowsports retail shop too....I think.  You also get a guide who is specially trained in aiding/supervising people with disabilities on the snow AND there is a variety of equipment to suit EVERY disability.  Sit ski's, modified snowboards, modified ski's etc.  You will receive an email confirmation of your membership and will be asked to email a passport photo and then they send you a membership card in the mail.

STEP 2:  Contact the snowfield of your choice and book in to a private lesson of your choice.  They are usually either 2, 3 or 6 hours long with a private instructor.

STEP 3:  Go back to the DWA site and fill out a Ski Guide Request Form and email to mel.chivers@disabledwintersport.org.au.  This helps the DWA decide what sort of guide will be required for yours or your child's disability, the equipment that will be needed and at this time you also need to tell them which snowfield you are booked at and the place and time for meeting for the lesson.

And that's pretty much it....  Mel Chivers from the DWA is great to have a chat to if you have any questions regarding how it all works or if you are unsure what equipment you/your child need to have and you can call her on 02 6450 0227.

For Ayla, we have booked a sit ski which looks like a little dodgem car with ski's on the bottom.  They modify the straps to suit the child's level of disability and they even hook the sit ski up to the chair lift and take them up the mountain.....I am freaking just a little at the thought of this but they tell me they do it all the time. She's booked in for a 2 hour lesson, and Joan, who is Ayla's Learning Support Assistant at school has offered to come up for the day and take care of Ayla after her lesson so that Steven and I can go snowboarding for the day.  It could just be me snowboarding yet....Steven is just a little worried about injuring himself whilst he's in the college.  Can't pass your fitness test if you're on crutches!!  Anyway, that's a whole other story :)

Can't wait to see you and your kids on the snow!!

So, Winter is upon us in all of her glory.  This week we have had a whole gambit of winter weather from frost filled mornings, beautiful still (almost warm) days with clear skies, howling winds straight off Antarctica, and whirling snow-filled mists over the mountains.  I have an itch and it desperately needs to be scratched....before I suddenly find myself too old to get on a snowboard!

It's amazing how much more you enjoy cold weather when you have suitable clothes.....even Ayla doesn't seem bothered by the cold weather with her duck down jacket on.

Steven has started at Police College this week.  He has permission to come home every night (it's a live in program) but we think it may have been a tad optimistic.  The timetable is really very 'full'.  Late afternoons and nights, followed by very early mornings so it's looking like he will mainly be home on weekends.  And so it was this weekend!  We actually have a long weekend for the Queen's Birthday (I'll get the hang of these ACT public holidays soon).  This morning we raced out to enjoy the beautiful cold weather with a bike ride to one of our favourite haunts for coffee and cake (yes, the detox is over!).  It was cold but I'm stunned at how invigorating and fresh the air is here.  I acutally enjoy being out in it.  You certainly know you're alive when that wind starts howling :).

We have our ABR workshop dates, August 5th and 6th.  Feeling a little nervous about this one because we have had someone helping us with Ayla's therapy for the last little while....and being a bit Type A, I'm always wondering if she is doing it right....And if you're reading this Jenny, I'm sure you are!!!  Thanks for your help!  It's just that it's the first time, that I have handed Ayla's therapy on to somebody else.  Jenny comes in 3 days a week and I cook dinner.  Everybody wins and we even get to eat :).  Other ABR'ers would probably think that 3 days per week isn't anywhere near enough but seriously, when you're body is screaming at you because you're burnt out....you just gotta do what you can do...and screw the rest.

I have a special post coming up soon......no clues but I feel excited about it.  In fact, I've been feeling pretty excited ever since we moved here.  Ooops!  A clue!  No pictures this time cos I will be sharing them in my special post.

News

We finally managed to get some footage of Ayla doing 'News' at school.  It's amazing how silent the kids are when Ayla's iPad is talking!  Very cool.....

And just for kicks.....here's another video of Ayla stepping into class this morning.

One Little Breakthrough Deserves Another......Surely?

We all know that I've done Potty Training posts before......long before.  Well, we're back at it again.  I started on the potty training venture around 2 years ago, then stopped because there didn't seem to be any recognition from Ayla that she knew what we were about with it all.  Then we started again.....aaaaannd then we stopped again.  And now, here we are again!  But this time seems a little different.

We have gone back to the toilet timing way of doing things....that is, putting her on the potty at set times of the day in the hope that she will get the rhythm of it and hopefully hold on when she knows potty time is drawing near.  Both schools are involved and have a roster of timing too.

Just lately I have noticed that when Ayla does 'do' something (like that?  See, I can be subtle), and we make our big hip hip HOOORAHHH, she has the biggest grin on her face and gives a knowing little giggle.  So I thought that finally she may be starting to understand what's going on and what's expected of her when she's there.  This morning....I KNOW she finally understands!  She was playing quietly in the loungeroom while Steven and I were in the kitchen.  Ayla rolled into the kitchen/dining area and straight up to her potty.  When I asked her (hopefully) if she wanted to do 'wees' on the potty, she smiled.  I was dubious but put her on anyway.......and whaddya know......the potty started SINGING!!!  We have a weeeeeeeeeee! And even better, that was her second potty wee for the morning!  I'm so excited!  Nappies don't get too darn comfortable in my house cos you are on your way OUT THE DOOR!  Soonish, anyhow.

We just have to keep trying with this.  Ayla's biggest hurdle will be letting people know that she needs to go and somehow I will find a way to help her do that.  We may go back to the toilet sign on the wall....I just don't know if that's the right thing to have on the wall at school.  I just don't want her beoming a teenager in nappies because her parents didn't really give the potty training a go.

Oh and by the way......yes, Ayla did do her news last week....and no, getting footage wasn't successful.  But she's giving news again tomorrow and Steven is going to film it.  PROMISE!

There's No Time Like the Present to Start Again

This week we have been starting again....again and again and again :)

This is the start (again) of my blogging.  It has been hard to get back into it.  This year, I am having a year that includes me.  I'm actually going to attempt to have a life too.  And it is coming together.

I have handed over the fundraising to Grandma and Grandpa for a year (Thanks Guys!!!) and that means no markets and no sewing unless I really want to.  I am now the Mother of a school-age child that is attending school 4.5 days per week and that means that I am also now a Working Mother.  I work as a Naturopath, seeing patients in a health food store 1 day per week and I have my own clinic room at a wonderful Yoga studio called Power Living.  The studio is truly becoming my 2nd home due in part to seeing lots of new clients (full day next week!  Yeeha!) and also due to the large amount of Yoga that I'm doing too.  Love, love, love Yoga....I feel like I have my brain back!

This week we have also been starting Ayla's schooling over again.  I sat in on her mainstream school class on Monday (just in the background) and took notes of things that needed to be adjusted, items that the 'disability' organisation haven't come through on and ways of fitting in Ayla's stepping, toiletting and feeding into the normal rhythm of her classroom's days.  It was an absolute eye-opener!  The kids are fantastic with her and the teacher is just inspiring.  I was amazed at how the kids could politely ignore Ayla's yabbering and pulling their hair whilst they were participating in classroom activities, but gravitate towards her and give her their full attention when their attention wasn't required elsewhere.

We have also started again with Ayla's 'speech device'.  We purchased an iPad earlier in the year so that we could create a speech device using the App, Proloquo2Go.  Much cheaper than purchasing an actual AAC device.  iPad + Proloquo2Go = $1050........AAC speech device = $14 000.  Just a small difference!  I have to say that Proloquo2Go is an AMAZING app.  Fully programmable and customisable to Ayla's needs and completely user friendly......we'll see if Ayla's LSA (Learning Support Assistant) Joan agrees when her and the iPad meet for the first time next week ;).

This afternoon, I spent a couple of hours putting together just a couple of things that might come in handy at school.....and I can change them if they're not.  The most exciting part is that next week, for the first time this year, Ayla will be able to participate in her classroom's 'News' segment of the morning....kinda like the old 'Show and Tell' that you and I remember.  I've typed in Ayla's 'news' and next week we will present it to her class (seriously, it lasts all of 1 minute...LOL!) and I will also try to get a video of it to post for you all.  I'm feeling all choked up just thinking about it....let's see if I can avoid bawling on the day.

So, there you go....all shiny and new :)

A World Where No-one Listens

It's been over a month since I last blogged.  I was taking some time to re-cuperate after an argument with a bout of pneumonia but today I feel compelled to write, even if it's just to purge.

I spent some time at Ayla's special school today for the Easter Hat Parade, and I'm astounded that after all this time (5 years, I know.....it doesn't sound like much but it sometimes seems like a lifetime), I still feel confronted and upset by the children in these schools.  I just have a couple of questions constantly revolving around in my thoughts......"What happens to these children when they finish school?"  "Where do they go?"  "Where do they fit?"  It always leaves me feeling despondent and sad, with a knot in my throat.

It didn't help that I witnessed two occasions of "our children" not being listened to.  These kids can't leap up and say "Hey!  A little help here???".  They whine, grizzle....sometimes bite to get somebody's (anybody's) attention.  And still no-one is listening.  Their sounds are just the background sounds of the environment that they and the teachers share.

What would it be like to be living in a world where no-one listens?

Isn't that what elderly people get????

Soooooo........I have pneumonia.  That sounds kinda weird when I say it.  Pneumonia.....yep, still weird.  Isn't that something elderly people get??  The good news is that it's not catching.  So Ayla and Steven are all good.  It started as agonising pain near my left scapula on the last night of my Mummy time in Melbourne.  Yeah...you know that whole Osteopath thing......yep, wrong doctor!  That ridiculous amount of pain didn't really have a whole lot to do with my ribs (they all cracked and creaked when they should have) but with those little things called lungs that are underneath.  I think the 2 days of 40+ degree temps kinda tipped me off :).

I've had heaps of time in bed.  I can't believe that in the first week I was so ill that I didn't even want to knit.  That's REALLY sick!  This week I have been knitting but that little guilt ridden person inside keeps saying, "Don't ya have some packing to do??......and some washing???? .....so ya can pack?" ....I swear that voice has an Irish accent.....or maybe it's the drugs....for the pneumonia!

Hmmmm.....holidays are coming and I think I seriously need them.  2 weeks of beach and 1 week with my Mummy.  Just what the doctor ordered!

Nothing Left to Do

I've been following Schuyler's Monster Blog for around 3 1/2 years now.....since we received Ayla's diagnosis and were given a name for it.  Rob refers to Schuyler's PMG as a monster that lives lurking behind his daughter's eyes.  The kind of monster that wants to strike his daughter down with the devastating seizures that are part of the symptom picture for Polymicrogyria for around 85 - 90% of those who have it.

Schuyler's case has always seemed to me to be the Fairytale of the PMG world......at least from the seizure point of view.  She's been my beacon of light.  I tended to think about the possibility of Ayla and seizures and then think, "Schuyler's 11 and she hasn't had any yet.  Ayla might be lucky too."

And then tonight I read Rob's new post.  And tonight I'm thinking differently.  Tonight I'm thinking.....

"My beacon's gone and that fucking monster is coming for my kid".

And now there's nothing left to do but let the tears of realisation fall.

Mummy Time

I went away to Melbourne on the weekend to visit a long time friend.  We both had some Mummy time together.  We haven't seen each other (without children in tow) in around 6 years.  I have just realised that we enjoyed each other's company and conversation so much that neither one of us even thought to take a photo!  I can't believe it.  It's ok though, because I don't think either of us will forget this visit, EVER.

We stayed at a lovely hotel, The Grand Hyatt, on Collins St, shopped and lunched on Bridge Road and in the City, and had the most amazing dinner at Neil Perry's Spice Temple...see I'm trying to give linkys to make up for the distinct lack of photos :).  And although our dinner at Spice Temple was one of the highlights.....unfortunately it isn't what made it unforgettable.  Somehow, I managed to pop 4 of my ribs and woke in the middle of the night in agonising pain and unable to breathe...I'm giggling now because I am feeling better....  I made it through the night by doing yoga stretches all through the night in the bathroom so I wouldn't wake my friend and after each little 'middle of the night' yoga session there was a little relief so I could get another 30 mins sleep, but by morning......Yeah, there was no salvaging me.  I was a wreck.  My poor friend spent the morning on the phone cancelling an appointment we had and trying to find me an Osteopath in the city.

I had to wait until 10.30 for the appointment but it was definitely worth it.  Oh, to breathe again!  Just 1 rib left to get back in and hopefully that will happen this afternoon.  Feeling heaps better today apart from not being able to take a full breath, cough, sneeze, yawn....possibly fart, I haven't tried that yet (sorry, in my house farts are funny).

Although I wasn't 100% well for the weekend I had a wonderful time just being me.

Communication - Simple and Glorious

Communication with Ayla can sometimes be very frustrating.....sometimes it can be simple and glorious.

Here's our dinner conversation tonight as Ayla was deciding that she was finished her meal:

Mummy: "Would you like some chicken?"...I place the chicken on Ayla's tray table.

Ayla: *picks up chicken.....drops over the side of the tray table on to the floor*

Daddy: "Do you want some noodles?"....Daddy places a small handful of noodles on the tray table.

Ayla: *picks up noodles.....drops them over the side of the tray table and on to the floor*

I think that's pretty clear.....and glorious.....and kinda funny.

First Day at School #2

Here is another very image heavy post. It was Ayla's first day at her Special school today, and another School Uniform. A fairly quiet day of getting to know the kids, the teachers and the Conductor (Gabi). Gabi is the person who is liaising with the teachers to create a program very similar to Conductive Education for our school.....and so far, I quite like her attitude to Special Ed. Anyone who stresses the importance of good nutrition for kids like ours gets a big TICK of approval from me :).

Ayla has made a gorgeous little friend already and surprisingly they both look very similar with their hair in piggy tails.

If you have read the earlier posts regarding Special Education here in Canberra, you will know that Steven and I have invested a lot of time into making, what we consider to be, 'improvements' to the school that Ayla is attending. Our philosophy has been that it is not enough to deal with a child's mobility impairment by plonking them in a wheelchair and concentrating on other things. That's not to say that a wheelchair won't be on the cards and it most certainly isn't implying that choosing a wheelchair for a child means that you're not working on their mobility challenges. Just that we don't think it's acceptable in a Special school situation where the children attend the school to get extra help with their challenges. The Conductive Ed program is really just the beginning and it is looking to be an exciting year for all of us. Will keep you posted when I am sure that my little something exciting is going ahead at school....

We have just finished the chook pen at the school and tomorrow I will be planting seedlings in the vege garden. And I think the chookies will be arriving late next week!