Ayla's Rainbow Connection

Communicate Me!

2012-01-28T17:54:00.001+10:00

Last Wednesday we had a visitor at our house. Another therapist to 'evaluate' Ayla. I never look forward to Ayla being 'evaluated' as I am never sure what they are going to say. But this turned out to be a pretty good meeting. 2 ladies, one Ayla's speech pathologist who doesn't have a lot to say (she's either shy or she is deferring to the other lady), and the other, another speech pathologist specialising in augmentative communication.

JACKPOT!!!! .....*little sing song voice*

Wow wow wow! Now this chick knows her stuff! She had Ayla completely worked out in half an hour and I actually agreed with everything she said. She's is really encouraged by Ayla's communication ability and thinks that developmentally, she's somewhere between 1-2 years and is what she calls an Intentional non-symbolic communicator to an early symbolic communicator. I know that sounds like jargon, but to me it's like music.

Long story - short......this lady has put together an incredible plan for Ayla's communication this year that has me really excited and she wants to train Ayla's new teacher and Ayla's carer, Joan, for me. If you have a child with communication issues.....you'll be hearing that music I was talking about. YAY!The teami have together for Ayla this year is going to be awesome......and I'm not letting them go! Their asses are MINE!!!

The video above is Ayla's communication with me tonight .......let's see where we end up!

A debrief in the wee hours

2012-01-25T01:25:00.001+10:00

The year of the dragon has begun with a bang....and not the sort that I would like. It's 1.30 am and I'm sitting here next to my sleeping child, listening to her breathing, just in case she stops. She has just experienced her biggest seizure ever and it's left her exhausted and me completely freaked out.Since these seizures started last year (August), she has only had 4 or 5 seizures that Steven and I refer to as 'the big ones', the rest are nightly and are almost non-events in comparison. They are not, of course, but when you compare them.....From the both of us sleeping soundly in our respective beds to a noise and a crack as Ayla's head hit the end of the bed, sending me racing into her room just next door. Ever noticed how far away your child's bedroom seems when you need to get there quickly....her room is right beside ours but it felt like a 100m sprint. The seizure began like most others. Back arching, jerking, noises of frustration......and quickly escalated to not breathing, continuous spasm and deep groaning......and my heart pounding in my throat. The spasm stopped and I waited for the aftermath that usually follows....but then the spasm started again.......and again.......and again. Fear and panic started to take hold as I raced down stairs and across the kitchen to her emergency medication. "Fuck! Why aren't these in our bedroom?"....because when this type of seizure happens so infrequently you get complacent. I should have known, I've been watching it building for days. They say this stuff (her meds) works in seconds but it took minutes. Minutes and minutes......long, agonizing minutes. The seizure changed straight away but the constant ticks and teeth grinding that followed went on forever. These drugs are supposed to knock her out - that's why I'm watching her breathing - but they don't seem to affect her that way. They make her agitated and restless. I'm so thankful Ayla and I started in a Steiner play group from her birth. Song soothes the savage beast....and I don't think I would have known any soothing songs if it hadn't been for play group.From the description, it probably sounds like the whole thing was over in seconds but, in truth, it was closer to 15 minutes. Did I say minutes? It felt like hours....If you're asking yourself why I'm sharing something so personal......what else do I do to debrief? I don't know how he does it, but Steven always seems to be working when the big ones hit. I doubt that there will be much in the way of sleep tonight.

We Watch, We Wait, We Try New Stuff

2012-01-17T12:20:00.000+10:00

It's been so long since I have blogged....with Steven being away at college and my work picking up something had to give. But Steven is home now.....and I feel a need to write a little something.

We have been asking the question for months now, "Is Ayla having seizures or not?" We thought Yes....and then we thought No.....and now we KNOW that Yes, she is having seizures.

Around 6 weeks ago we had an overnight hospital visit for a Sleep EEG and a phone call from the paediatrician this morning confirmed that they are in fact seizures. I feel 2 things about this....

1. BUGGER
2. Well, wasn't that lucky that Ayla had a seizure while she was hooked up.

Both of these were not the reaction I was expecting even of myself...but there you go. What are ya gonna do?

So we keep doing what we're doing and trial a new medication....cos clearly the last one isn't working! Poor kid is still having nightly seizures and we have noticed a little activity during the day for the last week or so which is highly unusual as her seizures are normally associated with her sleep....double bugger. So we watch, we wait and we try new stuff.

A Seizure.....or Not?

2011-10-31T18:16:00.000+10:00

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!

2011-09-26T19:18:00.000+10:00

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

2011-09-22T16:22:00.000+10:00

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

2011-08-31T17:08:00.000+10:00

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

2011-08-18T13:08:00.000+10:00

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

2011-08-08T11:23:00.000+10:00

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 theabove 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 groundreaction is transferred so that he/she is able to step on one leg and the trunkwould not sink, tilt or twist and at the same time he/she is able to swing theother leg.

Without these 3 factors, functional mobility wouldbe at best compromised and the child has to resort to his motor intelligence toperform at best mediocre movements under all theconstraints 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

2011-08-02T14:10:00.002+10:00

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

2011-07-24T18:23:00.000+10:00

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!!!

2011-07-18T17:01:00.000+10:00

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'

2011-07-14T15:08:00.000+10:00

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

2011-07-06T11:11:00.000+10:00

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

2011-07-03T19:17:00.000+10:00

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

2011-07-01T11:31:00.000+10:00

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

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

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

Snow Fun for EVERYONE!

2011-06-26T14:10:00.000+10:00

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!!

2011-06-12T18:26:00.001+10:00

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

2011-05-24T20:24:00.000+10:00

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?

2011-05-23T09:11:00.000+10:00

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

2011-05-11T17:57:00.001+10:00

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

2011-04-14T17:52:00.000+10:00

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????

2011-03-07T15:24:00.000+10:00

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

2011-03-04T17:29:00.001+10:00

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

2011-03-01T12:57:00.001+10:00

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

2011-02-21T18:39:00.000+10:00

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

2011-02-10T17:45:00.001+10:00

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!

First Day at School #1

2011-02-07T16:49:00.000+10:00

My big girl had her first day at school today......well, school #1 anyway. Monday and Tuesday are Ayla's mainstream school days, a day off on Wednesday and then Thursday and Friday are 'Special' School days....for a little while.

There were no tears from either of us. Tears were never going to happen on Ayla's part because she was way too excited about her return to school and playtime with the kids. She barely blinked when I said goodbye.

I didn't cry but I did choke up a couple of times. The first when I saw her all dressed in her uniform and surrounded by the other kids in her class. It was just amazing that we had made it that far. There was a time when I thought it may never happen.The next time I choked up was when a few kids were genuinely excited to see her at school and wanted to say hello. That probably sounds silly to most of you but when your child is the only non-neurotypical kid in a class full of neurotypical kids AND it's obvious that the other kids are VERY well aware of your child's differences, it does warm your heart to realise that they don't care and they still like her.

The third and last time I choked up was when the Principal of the school approached me. How wonderful and comforting to have the Principal come up to me and say, "I can't tell you how thrilled I am to have Ayla here today and for this year". We may have had to forego on the Steiner school down here, but it's an amazing experience to have absolutely NO obstacles to your child just being one of the kids in a mainstream school.

Ayla had an awesome day, beginning with squealing and giggling with excitement all the way to school, and roping several innocent bystanders into tickling her hands! She was totally exhausted when I picked her up at 1:30, but ready to do it all again tomorrow.

Learning to Say YES

2011-02-06T07:25:00.000+10:00

I've had lots of lessons to learn over the years....we all do. Among my lessons has been learning to say 'NO' and not feeling guilty about it. My new lesson however, has been to learn to say 'YES', though not in the same context. 'NO' was about not taking on more than I could handle. You know how it goes.....a friend asks you a favour and then of course you say YES before thinking what that means....or you are asked out for lunch with a friend on the same day that you have 3 appointments and a tired child in tow....but you say yes because "I can totally make that work!".'YES' this time around is saying 'YES' when I'm asked if I need some help.....Why yes, I do!!! I do need help with that door. Yes, I need help holding the umbrella whilst the rain is teeming down and I am trying to get Ayla out of the car and have us both remain dry. Yes, I really need help pushing Ayla's stroller whilst I carry a heavy box. And 'YES', I would really like some help with Ayla's ABR therapy.I know my little profile to the right says, "I'm a mother, carer, therapist, advocate, and fundraiser for my daughter Ayla, a wife and friend to my amazing husband, and a crafter.....and sometimes a little tired", and I know that sounds like I truly can do it all.....But I'm kidding myself. In that little comment, there is actually no room for me and I'm important too! So not only did I say 'YES' when the help was offered.....I actually asked for the help and got it! I have someone coming to the house 3 days per week to help with Ayla's ABR. During that time, I find that little piece of myself that loves to cook and I cook my family a beautiful nutritious meal. In peace and quiet, with space in my head to think, organise and create!

Can't Live Without Em

2011-01-28T12:18:00.001+10:00

Family is a bit of a theme for me at the moment....for so many reasons. Christmas (a traditional time for family) has been and gone for another year, I've had a visit from my Mum and Dad in early January (which is never long enough),

our move to Canberra has been fantastic for our family life with activities like toboganning, bike-riding, go for walks along the many walk/bike ways of Canberra, a 'semi' bushwalk through Tidbinbilla reserve (it's a sealed path all the way through the sanctuary) and trips to new places like Batemans Bay, and today is the anniversary of my little brother's life. I know technically, that should read death, but death is so morbid.

He's been gone from us for 15 years today and if I let myself dwell on that awful day, the pain of his loss is as raw now as it was all those years ago. So I choose something different. I choose to celebrate his crazy, hyperactive and hilarious life. I choose to not allow the past to always dictate my present and my future. I choose to love him and miss him but not to dwell on what might have been (I know he would have made an awesome Uncle for Ayla and then Ayla would have been spoilt with 2 Uncles to dote on her).

Family......you can't live with em and you can't live without em. :)

Family

2011-01-18T13:49:00.000+10:00

And so Sunday became Tuesday....again, Whoops! I have really allowed my brain to take a break over Xmas. I'm usually straight back into things as of the 1st week of January but I think with Ayla starting school this year, there is this sense that the year doesn't really begin until school goes back. Yup....no good can come of that!

I had to share this picture of Ayla when she first spotted Grandma stepping off the plane......it was so cute. You could literally see her mind ticking, thinking "Hey, I know you! Hang on a minute.....You're here!" There has definitely been a very big hole left here since Mum and Dad left.So what better way to fill a gap than with STUFF! Like our first ever family bike ride on Sunday. I don't know who was more excited, Ayla or me :).

Over the Xmas period we went shopping for new bikes and a 'you beaut' trailer for the Little Mrs. We each received some Xmas money from family to buy them as gifts and we raced out as soon as the shops were open. Steven and I have both been riding our bikes at different opportunities on our own. Steven often rides to work and I have had a couple of relaxing early evening rides too. But the family ride had to wait for everyone to be home from work and for the weather to play along too. And Sunday was that day. It was AWESOME! So good to be out doing an activity that I never thought we would ever be able to do with Ayla. I often watched other families out riding together and longed to be one of them.

Ayla's trailer has plenty of room in the front and back. She was loaded up with toys and I think next time we might pack a picnic lunch in the back! Our ride took us around a portion of Lake Burley Griffin, starting outside Questacon, heading towards the Old Bus Depot Markets, over a bridge, past Commonwealth Park (where they hold Floriade) and back over another bridge on Commonwealth Ave riding straight toward Parliament house. All the while, we had the shores of the lake beside us, walkers, riders and family dogs either moving with us or in the opposite direction. It was so great to be out there with all of the families of human and 'fur' kind, but best of all, to be out there with my family! We stopped at a little cafe on the lake edge before we packed up the bikes and trailer and headed home. And all the while, I was planning the next bike ride :).

I have to say, there are times when I wish I was back in Queensland but when I hit the bikeways and walkways of this city (read country town), I start to realise how this town is specifically planned with families in mind. I haven't come across one part of this town that isn't well thought out (ok, the shopping centres are an appalling exception!), geared toward families and totally accessible for strollers and wheelchairs. When you couple these great traits with a stone fruit season that has been nothing short of amazing to my tastebuds......I think I'm starting to like it here.

Whoops!

2011-01-14T19:19:00.000+10:00

Whoops! With all the fun that I had with Mum and Dad.....I forgot to update you all. I'll be back on Sunday with an update and some photos......after our bike ride :)

Taking the Time to Sniff Out the Plums

2011-01-02T14:06:00.000+10:00

Merry Xmas and a Happy New Year to everyone! I took a little blogging break over Xmas. I just needed a couple of weeks to live without constantly analysing what was 'bloggable' in my life. Not that there aren't plenty of things to be shared but sometimes there's just way too much to choose from....especially where Ayla is concerned. Everyday there is something new or different, a challenge maybe....and sometimes I just need to sit back and enjoy what's happening without thinking how I could share it with everyone.So the break is over and a whole new year of weekly blogging awaits! And for this, my first blog update of the year, I'm starting with something that has absolutely nothing to do with Ayla.....except for the fact that she has IMMENSELY enjoyed the fruits of my labour :).Whilst I have been sitting back just enjoying each moment as it happens around me I truly saw something, seemingly for the first time! But it wasn't the first time! I can't believe I have been staring out of my sewing room window looking 'through' this bounty for months and never knew what I had. It began in the last weeks of winter with a furious flush of tiny white blossoms on otherwise bare twigs.....and then proceeded to tiny little round red 'fruits'. Of course being in the middle of 'the burbs', I made the assumption that the tree was probably ornamental and the fruits, being red and so inviting, were probably nothing edible and at worst, poisonous. Nuh-uh......CHERRY PLUMS!!!!! It took me from late winter until around Boxing day to realise that these little beauties were Cherry Plums!!!

The tree is absolutely laden with them and I have been out in the 36 degree heat picking them, and last night I made a batch of plum jam......and there are plenty more jam sessions to come! I even found some seedlings that had started under the tree and I have dug them and potted them to take with us when we buy later in the year.

Mum and Dad arrive for a short visit in 3 days time, so I think I may also make a Plum Crumble for dessert......*slurp*

Ayla adored the jam for breakfast this morning....so much so that I couldn't take a photo because we were both covered in sticky mess. I'll try again tomorrow.

A - Freakin' - Men!

2010-12-16T18:40:00.000+10:00

It's been a little quiet around my blog world for the last couple of weeks. I just have nothing to say except.....

BRING ON XMAS!!!!

May the phones go deathly silent...

May my inbox and diary be empty.....

May the fridge be filled with food by the faeries and the meals make themselves....

May the rain disappear and the sun begin to warm my new hometown...

May my pile of library books never diminish...

and may you all be safe and happy this Xmas.
A-Freakin-Men!

A slight change of plans...

2010-12-03T17:54:00.002+10:00

Ok so I really suck at Gluten free Shortbread.....Ewwwww. It's like a mouth full of sand! But I am not giving up on my giving tradition!!!!

So, if you can master GF shortbread go on ahead and make it but I am making allowances for myself and my friend Shan who also apparently sucks at Shortbread :). I'm making any sort of delicious GF cookie to go with my Xmas ornaments.

I'm going to make these delicious morsels , with my own little twist. I've made them before so I definitely know that they work and are truly delicious.

So some hints for everyone else.......Check out the Gluten Free Goddess. She has a whole section on Cookies....all Gluten Free.

Good Luck!

Christmas Traditions

2010-12-02T06:07:00.005+10:00

I am late, late, LATE with this blog update! It's a busy time of year for all us, all over the world. Christmas is coming, school is finishing up for the year and there are holidays to plan. This year we have the addition of getting organised for enrolment into 2 schools...not to mention the fact that the Little Mrs is actually going to SCHOOL next year!!! With a uniform!! What the??? What happened there? More on that another time :).

The Mathilda's Market was very successful for us again this time. We raised $886 on market day and since then I have had orders for another $135 worth of goodies.....I'm not sure how I'm going to get it all done before Xmas but we'll see how we go.

On the ABR front.....not much has been done, unfortunately. Ayla has been sick for well over a week now with a nasty cold and eye boogers....translation: conjunctivitis. She seems to be gradually getting better now so I have plans to ABR her to the point of annoyance starting this weekend :).

And now, as is my *life's never dull around here* and flippant way, I am going to completely change the subject. With the market over and Xmas looming, it has set me to thinking about this wonderful time of year and the fact that apart from 1 little Xmas spent on a tiny coral cay chasing sea turtles, this is the first Xmas in years spent away from family and friends. Our little family will kinda be together. Steven is working nightshift over the days of the fat man and that means working all night and sleeping all day. But I have a nasty plan that will wake him early on Xmas afternoon for sure......it's called "the smell of crackling wafting from the oven". It's sure to work!

It has also had me thinking about how I have always wanted to create a family tradition around Xmas. Our current tradition (apart from the spending it with our families part) is the completely consumerist approach....wake early, hand out the presents one by one, watch each others happy responses and then eat breakfast. It's over in minutes and somehow leaves us all feeling a little empty.

Recently my friend Jen posted on Facebook that she had found the recipe she was using for her family's Xmas Shortbread competition and that the name alone should win it for her. I've always loved the specialness of cooking for others, especially at Xmas and so here begins my little tradition that I hope will grow. Not a competition....cos that's Jen's Family tradition.....but a little swap amongst family and close friends who want to join in. Even if you don't want to do any swapping, chances are that you may receive something from our family, from our heart and made from our hands. And that's the essence of what I am proposing. It's a little swap of homemade shortbread (just a little handful) and a Xmas ornament (handcrafted or not but most importantly, special) for the family's tree.

I love making shortbread and I LOVE eating it even more! I guess my idea is for this swap to happen in the earlier part of December. To re-create the excitement that we all used to feel in the lead up to Xmas, to let our friends and loved ones know that we are thinking of them at this time of year. And to take that edge off Xmas Consumerism. I've just never been able to get into the tradition of writing Xmas cards. The whole idea of having a huge stack of cards with two written lines, repeated over and over, from card to card, and the received cards being strung up all over the house like some sort of "Facebook Friends" list, has never appealed to me. I once had someone ask me, jokingly but it still stuck with me, if I didn't have any friends?? Why? I asked....."because you don't have any Xmas cards displayed around your home". Hmmmm

There is another experience that has lead me to want to cook and give at Xmas. Quite a few years ago, my Xmas gift from my little brother (my then little LITTLE brother) was some stunning and delicious Xmas cookies that he had made for me, all wrapped up in a little gift box that I still have. They were Lebkuchen cookies, which I believe may be a German tradition. Little heart-shaped syrup and spice cookies with a dot of jam in the middle and a chocolate coating on the back. I can still taste those delicious little bits of YUM! This is one of my most treasured Xmas memories. He was so proud of them and he was protectively checking the box in the fridge leading up to Xmas day, to make sure they were ok and no-one had been in there. Hands down....the best and most memorable Xmas present EVER! And actually,is the main reason I want to to do this.

I may have left it a little late this year to send out to everyone that I think of daily, but I sure am going to give it a go. And Ayla is going to help me so you'll be getting a little bit of love from her too. If you would like to join in....comment at the bottom. There are just a couple of simple rules.....The shortbreads must be made from your hands AND gluten free (don't worry, there are tons of recipes on the internet and it does seem very easy to convert basic shortbread recipes to gluten free). That's it! No other rules.

Changes

2010-11-20T11:05:00.006+10:00

I've trialled my new ABR exercises this morning....yes, I had a little break before I got stuck in (Ayla was exhausted). This time around I have been given a new format for Ayla's exercises. Instead of timing how long I manage to do her exercises for, I have to count the number of repetitions I do of each exercise.

Before each workshop the families are required to do a Home Performance Report where we calculate the average number of hours/day that we do on each exercise. And this is where I fail :(.....I do ABR consistently on Ayla throughout the week with Preschool days being a no go because she's not home and then goes to bed almost as soon as she does get home. The reason I fail at reaching the hours//day is because I have given birth to a CATERPILLAR!!!! This kid loves to move, wiggle, wriggle and best of all shred the towels and pads and the new trick.....pulling them out and throwing them away. Heaps of fun :). So this time around, instead of timing the exercises and averaging them, I am counting the number of repetitions. I think the idea is that we will all be able to see exactly how much work is being done on each area.

In saying all of this, it doesn't sound like I get much done and everyone seems to think that Ayla responds extremely well to the 'tiny' amount of work that I do get done on her. I say tiny only because when I compare my hours with other families, they are.....One lady I know can work on one exercise 3 hours straight!!!!! BUT, after this morning, I don't think the amount of work that I'm doing on Ayla is so tiny after all. I have done 3 of her prescription exercises so far today and on each one I have done 200 repetitions. When I looked at the overall time, it was only a few minutes longer than what it would normally have taken me to get 3 exercise done. It was requested that I aim for an average of 100 repetitions per day, per exercise. I did 200 this morning, and will do each time, so that when I average them come August, it should work out to 100 or more/day. That's the theory anyway.

I have thought a lot about (and resisted) the idea of putting my exercise tally up on this blog. I guess I thought that I would then be more accountable but then I thought I would be placing some really unnecessary pressure on myself too. Now I'm thinking......well, I am woman and as such I have the right to change my mind, as many times as I like :). So I have changed my mind and I will put my tally up at the end of each week.....until I feel too pressured and decide not to :). The weeks will run from Saturday - Friday.

And because I know that you are waiting to see another improvement....here it is :)

ABR November 2010 Improvement #2
WE HAVE A SCAPULA!!!!!

In this photo you can see that Ayla's back is relatively flat and featureless except for her immature bumpy little dragon spine. This is due to the deficiency in the posterior trunk volume. The scapula is submerged and the edge of the scapula is not visible.

But here we are in November 2010, we can actually see her scapula edge. The posterior volume has improved and the edges of the shoulder blades have emerged. This is due to an improvement in the underlying volume of her trunk and the connection of the shoulder girdle with the underlying fascia.....she's still got a hairy little back :)

Back from Another ABR Clinic

2010-11-16T16:41:00.008+10:00

Ok so we're back from our last ABR clinic for the year. We all worked very hard and Ayla is still completely shattered. Since arriving home on Saturday night Ayla has done nothing but sleep. She slept until 9.30 Sunday morning, slept 4 hours at Sunday lunchtime, slept 12 hours Sunday night, slept 4 hours on Monday lunchtime, slept, slept, slept, slept.....and the kid is still yawning!

Despite our interstate move completely throwing out our ABR rhythm, we have still had some really fabulous changes in Ayla's physical structure and my plan is to share them all with you over the next couple of weeks.

So here we go.....Improvement #1!....please excuse the formatting issues, I can't seem to get the photos side by side.

These are photos showing the strength (or lack of) of Ayla's shoulder girdle from April 2010.

You can see that her elbows are a considerable distance from her torso and point outwards as Ayla tries to maintain her stability in this prone position. Lifting her arm meant that she needed to balance her weight and stability by moving her torso in the opposite direction.

The photos below were taken last Friday, November 2010.

With the increased volume in her shoulder girdle, her stability in the shoulder has improved. What we see here is that she is able to use her elbow as support in the prone position. Her arm positioning during prone position has shifted closer. Closer elbow support requires more internal effort and she is even able to maintain close one arm elbow support in the one arm prone position.

Other good news from the clinic was that Ayla will now be attending every 2nd clinic instead of all of them. This is going to be much easier to cope with financially. For next year that means that we will only be attending clinic in August. I'm a bit nervous about only attending once next year but I'm sure the monetary savings will make it totally worth it.

Thanks to everyone who purchased items from Don't Tell Mamma and Mum and Dad's market stall and a very special thank you to some of you who made very generous donations to help us get to this last ABR clinic of the year. We couldn't have done it without you all.

Cone of Silence

2010-11-03T20:17:00.004+10:00

The Cone of Silence is a bit of a running joke we have amongst some Facebook friends. For most of the parents I chat to, the cone of silence is something they would all love to invoke on the days that their kids are ratty and noisy and sometimes silly. When someone appears to be having one of 'those' days, someone else is bound to ask...."Do you need a cone of silence??". It's all a bit of a giggle.

Today, I need a Cone of Silence. A big one that covers my whole house, including the driveway. As you can imagine...Ayla is not the reason. Well, not directly anyway.

If you have a neurotypical kid, this may take some explaining. But if you live in my world......you'll just get it.

It's hard to explain and it's going to be a total case of the farmer who complains when it rains and complains when it doesn't. My life feels like a complete shambles at the moment. Advocating at one school for Conductive Education, trying to raise money for Ayla's therapy, sewing, running web pages and shops, running a household, working, doing therapy, trying to make sure there is food in the fridge and food on the table and food in the lunchboxes, studying (for work stuff), masses of paperwork simply because my child has some extra needs .......but by far the most exhausting is the continual APPOINTMENTS! Far out....enough already! Seriously, I got rid of all the specialists in Ayla's life long ago but we still have appointments with the Speech therapist, appointments with the Occupational therapist, appointments with the Physiotherapist to discuss equipment needs for school etc., appointments with community connections to see how they can help us, appointments with schools, appointments with GPs to have paperwork filled out. Do you see where the whole farmer analogy is coming in? Nice huh? Yes, if I wasn't able to have these appointments I would be whining too because we wouldn't be getting the help we need.

It just seems that there is an appointment for EVERY day of EVERY week, and all because I need to fit in with their schedules. My entire day today was taken up with appointments....I didn't even get breakfast until 11am and my house is starting to look like pigs live in it. Anyway, I'm starting to rant now.

I chose a Cone of Silence for the rest of the afternoon. And in that time I decided this.......I need rhythm in my life. I need a weekly rhythm so that I know what comes next and can plan for it. So, Monday is appointment day. My new philosophy on appointments is this.....if a therapist can't possibly see us on a Monday, then we're just not meant to have that appointment. Tuesday is a home day/baking day and don't be surprised if the phone is off. Wednesday is a half day at school for Ayla and for me it's shopping day, Thursday is preschool for Ayla and sewing and errands day, Friday is preschool for Ayla and cleaning/sewing day for me. At the moment, weekends are taken up with working. So there. There is my new weekly rhythm. Now I just have to create an 8th day of the week so that I can do my entire week of ABR in one day :) Wish me Luck!

Another video of Ayla playing with Gus.

And now that my whine is over.....I would really love to thank everybody who purchased items from Don't Tell Mamma in the past 2 weeks and who made amazingly generous donations to Ayla's account. We now have enough to get to the next ABR workshop. Thank you from the bottoms of our hearts.

Cooper Walks for Cambodia

2010-10-27T10:17:00.002+10:00

I just wanted to share this story and photos with everyone. Cooper and his family are people we know through a Cerebral Palsy forum online. This little guy and his Mum are so very inspiring......I'll let the photo's do the talking and be prepared for a feel good cry.

Cooper Walks for Cambodia

Milestones and 'More'

2010-10-22T16:14:00.008+10:00

Today is AWESOME! AWESOME, AWESOME, AWESOME!

It's a gorgeous Spring day in Canberra....sitting here in a singlet top! Aaaah Lovely. After 10 weeks of sitting on the floor, our lounge has finally arrived. But even better.....the day began with a word. That word was 'More'....and that word came out of Ayla's mouth! The planets, stars and the cogs in Ayla's brain all aligned to produce her first, undisputed word. It may not progress in the same way that other kids' speech does where they say it once and then there's no stopping them, but it's still her first undisputed word. It was said completely in context and at the right time. She wanted more pikelets, of course!

It's a huge milestone and it made me stop and realise that in the last 9-12 weeks, there has really been a string of little milestones.

I've noticed that Ayla is using her stomach muscles to sit up lately, instead of using her arms to push herself into sitting. And that when she topples over, it's a controlled decent instead of a crash! Ayla is becoming amazingly curious about her surroundings, exploring every nook and cranny in every location she visits. Her Preschool teacher told me today that she covers every inch of the preschool room (and it's a big room), each day that she's there. Yesterday they opened the door to let a breeze in and within seconds they couldn't find Ayla and she was sitting outside playing in the dirt. AWESOME! We have a 2-way bathroom and often find Ayla taking herself off to the bathroom to play. When we pull her out of there (it's not really safe to play by herself) and close the door, she knows to roll around to the other door! She initiates games of peek-a-boo, slaps her hands on the highchair to tell me to hurry up and put food in her mouth, passing things to me when I ask for them, rolling to me when I call her over, and attempting to 'put' things into and onto other things, filling up the containers in the bath and throwing them out of the bath, water and all. And it took a word (the biggest milestone of all) to remind me of all these little ones that are no less amazing.

To celebrate all of these milestones....and the milestone that is me finally working out how to embed a video in blog, I have included a video taken in January of Ayla and my Mum's dog, Gus. And at the top, as promised, the painting that I bought for Ayla from the Art show. It was painted by one of the students from Ayla's Specialist School.

Oh and on a slightly different topic.....today we realised that we might be around $800 short for the next ABR workshop which is on Nov 13....so if you have been eyeing something off for Christmas presents on either Don't Tell Mamma or Mum and Dad's market stall, we would love it if you could consider purchasing it;)....it's going to be pretty tight this time around. Thanks so much for everyone's support, we seriously wouldn't be powering ahead like we are without you all.

Choices

2010-10-16T11:59:00.003+10:00

Slippery Dip Fun with Daddy at Floriade

Feeling all warm and fuzzy today. Last night was the Opening of the Art Show at Ayla's Specialist school. I went along to help out with selling the paintings and craft entered by the students....spent a little money too. I bought the most gorgeous handmade wrapping paper and cards and a funky little painting for Ayla's room. I'll take a photo of it when I get it home next week. It's the biggest fundraiser of the year for her school and this week, more than ever, we really wanted to jump in and help raise that money.

Earlier in the week we had another meeting with the Principal and was informed that the Executive Teacher had already been up to visit Ayla's old school, Xavier. She had spent an entire day not just looking at Xavier but taking part in the Conductive Education programs in all of the rooms as well as having a cuppa with the parents at morning tea. I had the privelege of having a chat to this teacher last night at the art show and found out that she was SUPER impressed and absolutely loved her day there. Apparently, she's been eyeing prospective students for the new program that we are hoping to have started first term 2011 in Ayla's new school. I'm feeling all warm and fuzzy because not only did she visit Xavier and everyone from Xavier sent their greetings down to us but.....the visiting Teacher was thoughtful enough to request Ayla's placemat from Xavier so that she could have it here at her new school....made me cry....as well as being warm and fuzzy :)

So, we have a few meetings with the prospective Conductor and Steven and I will be holding meetings with all of the parents of the school to explain the program, the benefits and what some may see as the disadvantages (those being that you will actually need to come to school and take part in the program), and then re-assure them that they won't be bullied into anything they don't want to do. The Conductive Ed program will be purely a program of CHOICE. And I think CHOICE is a very important word in the disabilities world. CHOICE is not something that the people who are part of this world usually experience. And I, for one, am very proud that myself and Steven are going to be instrumental in bringing CHOICE to Canberra Specialist Schools.

Foods of Fancy

2010-10-07T16:44:00.002+10:00

A couple of weeks ago I was all aghast at the 'Party Food' that the parents were providing for the Preschool End of Term Party. There was a list of foods pinned to the noticeboard and each parent had to put their name beside the food that they were bringing. Keep in mind that Ayla and I were new to "mainstream" schooling and had always enjoyed the healthy lifestyle that our Steiner Kindy provided.

So over I go to the list and gradually run my finger down it.....

Party Pies (1 dozen)
Party Pies (1 dozen)
Party Pies (1 dozen)
Sausage Rolls (1 dozen)
Sausage Rolls (1 dozen)
Cheerios (1 dozen)
.....and the list goes on, you get the idea.

All the way at the bottom of the page was Fruit Platter....THAT'S ME!!! So I put my name down beside the fruit platter. And so began my mission. Steven made some passing comment about the possibility of me getting all 'Jamie Oliver' and doing a big cookup and then all the kids not eating it. My response was ..."No no...just doing a really FABULOUS fruit platter". And I did......but then somehow I got all 'Jamie Oliver'...oops.

I nearly cooked myself into an early grave. I just couldn't stop thinking that if you provided healthy party food, the kids would eat it. There's really no need for all of the party pies and cheerios. In any case, I'm not really sure Cheerios could be classed as a food anyway. Just in case you don't know what a cheerio is....cocktail franks, weiners, little boys....whatever you want to call them. Those things that have something resembling meat....with all the added grissle, fat, bone, feathers....bluck!

Anyway, I digress :)

I decided that along with my FABULOUS fruit platter, I would come some other irresistables. We cooked Sesame Buffalo Wings (no buffalos don't have wings...chicken wings) and then I thought I would give a little respect to the new season - SPRING - and cook Devilled Eggs....eggs...spring.....I know your laughing at me!

You can see the FABULOUS fruit platter up the top.....fabulous right??? Right??? Yeah well anyway, I made 2...couldn't help myself.

Dropped it all off at the Preschool in the morning with everyone agape and most likely thinking, "I didn't see that on the list" and Steven hoping that it wasn't going to be a Jamie Oliver Healthy Food Disaster. And you know what? It wasn't :)

Steven did pick up and apparently it was a resounding success with all of Ayla's dishes walking off the table first!!! Weeeeeeeeeeeee. Experimental success! It seems that healthy party foods, presented nicely, really are the Foods of Fancy for Five Year Olds!

In other breaking news....the Luxmoore Family have returned to the world of Broccoli Box Farming......miss my vege patch. See below.

Ayla-ism

2010-09-30T15:26:00.004+10:00

Hold on to your hats....or make a cuppa.....it's a long one!

When you get to the September school holidays, you realise that the year is beginning to draw to a close. As a child, that was hugely exciting. School holidays for a whole 6 weeks, a seemingly endless summer, the beach, christmas, parties, bbq's, friends, family, vacations, and then the excitement of starting a whole new school year. Another birthday, another year older.

Even as an adult, this time of year can become exciting as we plan our activities for Christmas and visits with family and friends. But this year I'm finding that the reminder of the year drawing to a close is bringing with it an anxiety. For the past 5 years I have been merrily 'putting off' making too many decisions about Ayla's schooling life. Yes, I had her enrolled in Silkwood School but No, I didn't really think too hard about what that would like or how that would work or what that would mean or how we would fit Ayla into this schooling mould.

Ayla's condition is, at best, complicated. And before you rush into thinking that I'm just another parent who believes her child to be 'special' or 'different' to other kids with disabilities and therefore requires more....more 'special' or more 'different', let me explain that....as best I can.

Ok....where to start. Ayla has a condition called Bilateral Frontal Polymicrogyria. She kinda fits under the Cerebral Palsy spectrum.....but doesn't have CP. The 'professionals' in Ayla's life suspect she has Cortical Visual Disorder (Steven and I are pretty convinced too)....but she's not blind or sight impaired. Ayla is non-verbal.....but it's not a language disorder that improves with Speech Therapy and an augmentative communication device is great in theory but until Ayla reaches a stage where she learns to point and/or make choices, she may not fit this mould either. Ayla has a mobility disorder....but a wheelchair is not the answer. She wants to be on the ground, rolling and dragging herself....there aren't too many (read: NONE) Learning Support Assistants who would be prepared or "allowed" to lift Ayla in and out of her chair all day at school. Trust me, even in her stroller, she only lasts maybe 30 minutes before she's screeching to get out! And, her condition (being categorised as 'low tone' or 'floppy', mean that just sitting up and playing quietly is incredibly exhausting......I don't know of any schools that incorporate sleep time into their schedule either.

Anyway, I'm starting to digress...... Amongst all of the 'professionals' that have come and gone from Ayla's life, there has been one comment that has been common to all...."Gee, she's really hard to assess, isn't she?". This comment was really hit home to us when our Neurologist mentioned that with most children he sees, he could make a very accurate guestimate of which part of the child's brain was affected just by observing the child and talking to the parents. He was genuinely stumped when he met Ayla. He suggested that she seemed to be at a different level of development (physical, emotional and intellectual) for different parts of the brain. So YES, is she is rather complicated.

Steven and I have had Ayla in our hearts and home for the past 5 years. We know her better than anyone. You could say we are experts in Ayla-ism. Until I start to agonise about schooling. There are schooling protocols in place for children with learning difficulties, schooling protocols for Autism Spectrum Disorders, schooling protocols for mobility impairments, schooling protocols and even just 'schools' for the deaf and the blind......there is no school for Ayla-ism. And when you look at it....No, there isn't a school for Tayla-ism or Kaelen-ism or Asha-ism or even Poppy-ism.....but all of these kids (yes, these are real kids that I know) they are able to be 'catered for' in the class room. Although Steven and I are experts in Ayla-ism, we couldn't honestly tell you where Ayla is at cognitively/intellectually. We don't know whether we can teach her to read....Hell, we don't even know if she will be able to use a communication device! I could go on and on here as there is so much whirling around in my head but it might be best to cut it off here and tell you what I do know.

I do know.....that 'Academia' is not at the top of my list of the most important things for Ayla. That's not to say that I don't think she's capable. I just think that there are things like dressing herself, feeding herself, communicating, toiletting herself etc that are waaaaaay more important at this point in time. Academics will be a bonus.

I do know.....that as 'Specialist' schooling currently stands in the ACT, that's NOT for Ayla! Ayla doesn't need babysitting and she doesn't need to be moved from one 'Sensory Station' to the next. That doesn't teach her how to use her body, it doesn't teach her life skills and it doesn't teach her how to communicate. Our meetings begin next month in regards to starting a Conductive Ed class at her school....so we'll see what happens there.

I do know.....that Ayla needs at least 2 days per week outside of the home and playing with other kids, both neurotypical and non-neurotypical. I also know that currently 2.5 days per week outside of the home is all she can really cope with at the moment. She begs me for sleep in the middle of EVERY day and with her current 2.5 days, there are no sleeps or rest time. Ever since our move, Ayla has been very tired and run-down and has been experiencing constant cold-sores EVERY week. She needs her rest just to be healthy.

I do know.....that I need Ayla to have 2 days per week outside of the home. Call it sanity time, time out, time to go to work....call it whatever you want, I just call it completely necessary!

I do know......that I can't change every school we go to to suit Ayla's multi-dimensional and complicated needs. And what about a school that fits in with the educational philosophies of her parents?

I do know what I want her 'learning' to look like.......life skills (feeding, dressing, toiletting, communicating); time for her ABR therapy; other 'life skills' like growing food and cooking, good nutrition and wellness; respect for herself, for others, for Mother Nature and the Earth; music and singing; celebrations (of the seasons, family and friends); healthy doses of Nature as opposed to dead grass and softfall in playgrounds that don't cater for her; and I want to know that 'inclusion' doesn't just mean that she's wheeled to a location in the playground where she can 'watch' the other kids play.

If you look at just one school or schooling model....this may be a little too much to ask. So, I'm not. I'm not looking at just one. Somehow I'm going to CREATE a schooling model that fits Ayla. One that isn't completely set in stone and can be changed, tweaked and moulded to fit Ayla. A model that isn't one size fits some, and all the others be damned.

I'm exploring. Conductive Education, Montessori, Steiner, Homeschooling, Mainstream schooling.....I'm looking at them all and SOMEHOW I will create a schooling model called Ayla-ism.

Boots n All

2010-09-22T09:59:00.003+10:00

Ok, so I have done my usual and jumped in Boots n All. I have a job. Eeeeek! I have a job. Exactly where I wanted to be, for now. Not exactly the hours I was hoping for but it's a start.

This is my new home, workwise. It's called the Allergy Centre and yes, that's perfect for me. I start on October 1st and will be working just on the weekends that Steven is at home for now. Yes, Saturday AND Sunday....blah! But on the upside, it's only around 2 weekends a month and only until something more solid appears in the roster....you have no idea how much I am psychically WILLING Thursday girl to find a new job and leave :). Another upside is that on Sundays, I will be the only Naturopath on, which means I am able to earn extra $$. Loving the extra $$ right now :) I just have to remember that with the snowball I put in motion this school term.....next term could be a really busy and wild ride. My awareness is up and I need to not overstep the mark and burn myself out. I'll try anyway.

I am off to Sydney this weekend (all by myself....I'm a big girl now!) My first night away from Ayla, on my own. I have left her for 1 night before but Steven was with me. I know she'll be fine...of course! She's with Daddy. And I know I'll be fine....cos I will be busy with a whole weekend seminar on Allergy Treatments AND I have organised a fun night out with a friend who lives in Sydney. I'm feeling kinda liberated by those thoughts.

In other exciting news......Don't Tell Mamma....our little ABR fundraising offshoot, has once again had its application for the Mathilda's Markets accepted. This is a big one for me because this year, I have made it into the Christmas markets and it's going to be HUGE!

Well, with school holidays looming, ABR is at the forefront of our minds and that is exactly what we will be doing LOTS of in the next 2 weeks. We have our ABR DVD to record and send off on Monday which tells me that our next workshop is not too far away and also reminds me of what a pitiful effort we have made this time around....moving interstate and injuring my shoulder definitely hasn't helped. So I'm looking forward to the workshop in November....it has a wonderful way of boosting motivation all over again. I try not to give myself a hard time....ABR therapy is all about 'the long term' gain......but if you know me well....you will also know that I am borderline type A personality in some areas of my life. Particularly when it comes to achieving! Honestly, if they gave out medals and recognition for housekeeping....this house wouldn't know what hit it.

My New Career

2010-09-16T17:19:00.004+10:00

Image courtesy of http://tce-utotes.pbworks.com/Spring-Facts

Prior to the Little Mrs (aka Ayla) coming into the world and making us a family, I was the perpetual student. Furiously studying away for years to give myself a career that I would love. And I do love it....when I get to work in my chosen career. The last few weeks I have been asking myself, "Is it possible to have a career AND a special needs child? Or is Special Needs my new, if completely unchosen, career?"

When I ask myself these questions, the answers pull me in different directions. I wouldn't like to think that 10 years of study and experience go to waste or just go to keeping my family healthy. I remember when I was in Year 12, my Grandfather said to my Mother, "Why are you going to send her off to University for 4 years when she's just going to get married and have kids and it will all go to waste?" I'm pretty sure he was just trying to stir me up....it was said with his usual mischievous eye twinkling but still, if I don't go back to work, he's right. This leads me to another question. "How many days per week must one work to be considered to be working in one's chosen career?". Seriously, at this point, I'm hoping the answer is one. This new Special Needs career is exhausting! I won't bore you with details of my day but between the lifting, feeding, bathing, toiletting, therapy, schooling, fundraising, advocating and then my 'usual' household duties of cooking, cleaning, grocery shopping and just ensuring that my family is completely nourished and well, I'm not sure how much energy there is left over for caring for other people.

I'm going to a seminar next weekend.....professional development to ensure that I can continue practising (gotta keep those points up), and I am super excited about it. Not only is it in my chosen career but also in my chosen specialty. But these courses are expensive and I guess that's how I came to be wondering if a career is something that is possible for me now.

Just sayin.....

Ode to Mr Music

2010-09-11T12:18:00.002+10:00

Mr Music 2007 - 2010

Mr Music has been Ayla's FAVOURITE toy for 3 years. We have heard his constant jingles, day in and day out, for the last 3 years. Most parents would have ground their teeth down to stumps with his constant singing....but Mr Music allowed us to clean the kitchen uninterrupted, make the bed, make dinner etc. So here is Ayla's Ode to Mr Music...

Goodbye Mr Music
You were my favourite toy
Your happy jingling tunes
Brought me so much joy.

But now that you've stopped working
It's time to say goodbye
So in the big green bin outside
You lie there warm and dry.

I'm not a poet by any means....but we will miss him very much.

On Wanting More.....

2010-09-02T17:07:00.003+10:00

Here's another photo from Ayla's Book Week Celebration. She's dressed as her favourite book character, Clara the Cat.

It's funny the things that happen when you openly tell the universe..."I WANT MORE!!!". More is exactly what I'm getting.

It's been a couple of weeks since the "Is it wrong to want more?" post. If you feel like you need to refresh...just click here. So much has happened since then but I just wasn't able to share it because it was big....really BIG. And I made it happen! I think I was so shocked at the level of my success that I was literally rendered speechless. I know you don't believe me.

I have re-written this part of the post several times now (on the computer and in my head), but I've decided to give you the short version....for the sake of your sanity and mine ;)

In the few days following Ayla's visit to the Early Intervention unit at the Specialist school I was a cauldron of emotions....angry, upset, disappointed, livid, frustrated and hopeless. And then one day I was just pulling into a car park at the gym when I heard this song on the radio. I have no idea what the song was or who sings it. I only heard one line of the song as I was switching the car off....kinda like it was talking to ME. It said, "You've never been one to back down, so why are you walking away now?". That's it. That's all I heard. And as I walked into the gym to burn off some of my anger I thought...."Hell yeah! Since when have I backed down and given up?" I worked my butt off through that session and then got back in the car, took my phone out and started looking up Conductive Ed in Canberra and contacting some people who were mentioned to me on the Cpecial Parents forum.

And now for the long story, short.....

In the following days I contacted the Principal of the Specialist school to explain to her why I was NOT enrolling Ayla in her school. She was fantastic by the way....no defensiveness. Just listened and took it all on board. And I'm proud to say that everything that was in that last post was said to the Principal. She had mentioned previously that she had an interest in Conductive Education so I thought that I would explore that a little further with her. She's not just interested. Since our first meeting with her she has been exploring her options on how she might introduce it at the school but has met with opposition. Steven and I offered to help her. In fact, we offered our COMMITMENT to her and her school in offering Conductive Ed.....and here it began to snowball.....AVALANCHE style!

Since that day we have had the President of Friends of Brain Injured Children pledge her support and has offered to also help the Principal, the Conductor (Conductive Ed trained teacher) has contacted the principal, the principal of the Specialist school has contacted the principal of Xavier Conductive Ed Unit, 2 teachers from the Specialist school are going on holidays to Europe and the USA and both have organised to spend a couple of days in Conductive Ed units whilst on their holidays, the Principal is travelling to Brisbane to visit Xavier next term with 1 other teacher and an LSA (learning support assistant), and another set of parents have pledged their support and help in introducing CE as well. At this stage, the Principal had expressed that she was very excited but reminded me that nothing was set in stone although she 'thinks' she can do it.

Today I had another meeting with the principal where she expressed again that "she thinks she can do it"....and I thought I would jump in with ...."Actually, I know WE can do it!"......brazen, I know :). When I left there today, she didn't think she could do it anymore, it was.........."Gosh Darnit!!!! Let's Do It!!!! ".

So, the planets have aligned.....the avalanche is beginning to settle and it seems the real work is about to begin. At the beginning of next term there will be our first official meeting with the Principal, the Conductor, ourselves and the other parents and all of the Conductive Ed visits will begin. Not bad for 2 weeks work! Although things are still not set in stone, the Principal pledged today that she would like to have her first group beginning CE by the start of Term 1, 2011 and she's already ear-marked the kids she thinks will be suitable. NOICE.

Ayla is attending the school on Wednesdays only and only as a 'Playday' so that we can enmesh ourselves in the school community, get involved and help Karin to introduce CE from the inside. I have made it abundantly clear that the programme is by no means good enough for any child in Early Intervention. But, it's a means to an end and Ayla still has her preschool days.

Oh and just on a side note....the Specialist School has a little vege patch started....and today I convinced the Principal that she also needed chooks to make it complete :) So our chook pen will be arriving at the school on Monday and the chooks a few days after that! I'm totally scaring myself.

Fighting Monsters with Rubber Swords: Three Things

2010-09-01T20:22:00.002+10:00

I was just getting ready to update you all on our successes of the past week when I quickly dipped in to read a post on my favourite blog.....and I wanted to share it with you. Sometimes this guy scares me with how accurate he is on explaining not just his own feelings but others in similar situations. I'm certain that several times this week I have said all of these 3 things at least once.

So I'll leave you with this tonight and post again tomorrow.

Fighting Monsters with Rubber Swords: Three Things: "Sad day at Legacy Books in Plano Originally uploaded by Citizen RobI'm closing this particular post to comments. Sometimes I need to hear,..."

We'll be back...after this seriously short ad break

2010-08-28T12:51:00.002+10:00

Here's a little photo to whet your appetite. There is soooo much going on at our place at the moment. Just need some time to order my thoughts and I'll be right back to share :).

Don't worry.....it's all good stuff at the moment....just lots to think about.

Is it wrong to want more?

2010-08-18T16:47:00.003+10:00

That's the question that's running through my mind today....like a broken record. Is it wrong to want more? Not for me, for Ayla. Which I guess is for me too.

I've been feeling a little hesitant lately about everything to do with Ayla. I guess she's just coming to that age where I have to make decisions about her future and decide what is best for her. The ironic thing is that I had already done all of this. In Queensland, I knew we had Ayla in all the right places and that the school we had chosen for her was the right place too. Don't get me wrong.....I am really liking Canberra a lot and although I am missing friends, I am very happy to be here. I'm just not happy with the choices that we have for schooling.

In Queensland, Ayla was attending Xavier Special Ed which is the only Conductive Education institution in Queensland and only 1 of 3 in the country. The kids were worked from the time they stepped into the classroom until the time they left for the day. They had playtime but it was always very structured and incorporated into a task. Ayla learnt that although her body had limitations, she could work with them to achieve the outcomes that she wanted. From 9 months of age, Xavier was teaching Ayla how to roll onto her stomach and flip her legs over the side of a table or couch in order to get down safely. It's taken a long time (she's 5 now), but we watched her do this for herself just the other day.

Today we visited a Specialist School here in Canberra and joined in with their 'programme' for the day and I have to say that I am disappointed that my suspicions seem to be correct. From my observations today, their 'programme' seems to be nothing more than moving from one sensory experience station to the next. Before anyone shoots me down.....I know that this is just what some children need. I watched a little one today go from having her eyes pretty much closed and not taking part to being wide awake and excited when they took her into the sensory room. The room is full of pretty lights, soft relaxing music, bean bags etc. But this is ISN'T what Ayla needs. Yes, she was happy to sit in the bean bag and play with a toy....but she can do that at home! I have always had a suspicion that Special Schools tend to cater for the children who have the greatest disability. And that's great....that way those kids aren't left behind. But it doesn't have to be that way and Xavier proved that to us. Here's an example....

At Xavier, there were a few kids with some very major disabilities. These kids literally struggled to do anything for themselves at all, not even holding their own toy. But these kids were brought into exactly the same programme as Ayla. Yes, they needed more help but they were worked just as hard and encouraged to always move forward in their achievements.....and believe me they achieved. They knew right from left, if they were asked to bend their right leg they gave it a red hot go and you could see it. If they were asked to raise their head, they did their best with that too. They were helped to 'step' between work stations and were expected to take part in hand tasks too. Those kids were worked and they learnt how to use their bodies to the best of their abilities.

At the school we visited today (and we visited previously too), there was none of this. On a previous visit, those children with the most severe of disabilities were to be found lying quietly on a bed with teachers and teacher aides passing by. Not good enough. Today, Ayla and I arrived after everyone had already settled (about 45 mins into the programme). When we arrived, the kids were 'finger painting' on the table with a non-toxic paint. It looked promising because it was an activity they used at Xavier as a hand task too, but the similarities ended there. At morning circle they welcomed all the kids and they had to find their name and put it on the board. They sang one song (count them.....1!) and then moved down to the gym/sensory room. The gym is awesome! There are 2 trampolines, big supersoft fall mats, rope swings, wall ladders, slides....fantastic!!!! And completely under-utilised with this group! Far out, if Xavier had this equipment they would have thought all their Christmases had come at once and every single piece of equipment would be used for the benefit of ALL the kids. Ayla and I had a little play on the trampoline and then were asked to join some others in the sensory room. Nice but boring. And it was at this stage that I had to work really hard to keep the tears from coming and remain polite to everyone. Then it was back to the classroom for lunch time and outside play. Lunch time....the kids were just fed and some of the teacher's went off for a break. I'm not knocking the break but at Xavier....all hands were on deck to help the children with feeding and learning to feed themselves. Outside play, the more able bodied kids played on swings and bikes and the least able-bodied we wheeled to a spot in the yard to watch the other kids play. Not good enough!

I know at this age, it's all about play. That was constantly repeated to me all day. But with kids, work is play! The kids at Xavier played....but it was structured play and they loved it. Come on People!!!! This is supposed to be EARLY INTERVENTION!!!! I'm sorry, I'm just not seeing it.

So again I ask.....Is it wrong for me to want more??? I know the answer is NO. But where do I go from here? This school would be perfect if I was looking for somewhere to 'put' Ayla....but I want more. I want Xavier and I can't have it. Lots of people recommend just having Ayla in mainstream schooling....but she needs more than that too. She deserves more.....I just don't know how to give it to her.

A Magical Winter Wonderland

2010-08-12T15:56:00.003+10:00

There is something so magical about snow. The silent drift of snow falling to the ground, snow drifts perched precariously in the branches of trees and shrubs, that pristine cover of white that's so sparkly and fresh, the squeals of children and adults alike as they zip down the slopes, rosy cheeks, steamy breath, drippy noses.....and then there's the sound of Ayla, who didn't really enjoy the snow as much as we had hoped:) LOL! It's kind of understandable.....she didn't have the best start.

Within 20 minutes of arriving, I had already sat her on the toboggan, up against a wall so that I could fix up the boot that kept falling of her foot......enter that 'magical' snow drift that was clinging 'precariously' to the roof! Yep.....PLONK! Straight on her head! The look of shock on her face was priceless and it probably didn't help that Steven and I cracked up laughing. Add to that the conditions. I put it out to the universe that I wanted snow to be actually falling so that Ayla could experience it all....and fall it did....in blizzard fashion :). It didn't stop snowing all day and was the heaviest that I had experienced (apparently they have a blizzard up there today) and the breeze was quite strong too, so that the snow was somewhat 'whipped' into your face and eyes. We didn't have goggles and they were the sort of conditions where you really did need a ski mask and none of us had one.

But we soldiered on and went for a few runs on the toboggan. At this stage Ayla still wasn't enjoying herself so we decided to go inside and have lunch. According to Ayla, lunch and the DVDs on the way home were the best part of the day! It wasn't all bad though. We dressed her up again after lunch, grabbed that toboggan, avoided the snow drifts on the roof and spent the best part of 90 mins going up and down the slope. And we even saw her crack a smile a few times on the way down the hill.....and when you think about it, that was exactly the reason we took her!

It was absolutely worth the 6 hours of driving for the day and we plan to do it again next year for a few days. We'll need babysitters though......anyone??? Mum? Dad?? :) There is no way that Steven and I could visit the snow again and not get on a board.....it was a little torturous to watch the boarders and then walk away from them at the end of the day.

So, we know what we need to take to make it more enjoyable for Ayla next time. We know to stay away from the outer walls of buildings. And we know that Ayla is going to learn to LOVE the snow.....cos her Mummy and Daddy do! For me, the snow will never lose its MAGIC.

Journey

2010-08-08T13:58:00.002+10:00

The Chinese philosopher Lao-tzu was once quoted as saying, "A journey of a thousand miles begins with a single step". It's a nice saying.....although when I think that this guy was supposed to be around from 604BC -531BC, I have to say I'm questioning whether that's what he said! Did they even talk in miles then???? Anyway, here in our new home in Canberra, our Journeys begin every time we get in the car :)

Last week we decided to go 'Snow' Hunting.....we weren't terribly successful finding any snow but we had a good time tripping around the place. The day before we could see snow in the Brindabellas and a few people suggested we go up to a place called Corin Forest where they regularly get snow.......but not this time around. So instead, we visited Corin Dam which supplies Canberra's potable water. We could see snow over on the next mountain but we really had driven far enough that day so we admired it from the VERY chilly edge of Corin Dam. It was really windy and the temp would have to have been very close to zero. I had gloves on and my hands were still hurting from the cold! Corin dam was at the end of the road that we had been travelling on so we decided to stop at a couple of places that we had seen on the way up the hill.

We headed down to Gibralter Falls next. Apparently, the most accessible waterfall in the area! Ah no....actually it's not. I think we made it about 15m into the walk before we decided that it wasn't terribly 'accessible' with Ayla :). It was all rocks and steps....maybe they had a different idea of what 'accessible' was cos it was kinda like Sydney.....NOT accessible. So plonked ourselves on a big rock and watched the view while listening to the waterfall and soaking up some beautiful winter sunshine. Ayla even discovered some moss on the rock and was quite taken with the way it felt.

And our last stop, on the way home was a little reserve in Tidbinbilla. We stopped at the information centre and then decided we would come back another day as Ayla was making it known that she was MORE than ready for a nap.....so, next time.

And although that was the end of our Adventure that day....we are off on another on Tuesday. We are heading up to Selwyn Snowfields for the day to take Ayla toboganning and for her first ever play in the snow. We can't wait! And she's just going to have to push through nap time for a second wind because we will probably arrive at the snow about an hour before nap time.....wish us luck!

For Jessica

2010-08-03T16:57:00.003+10:00

The link to this blog post was posted on Facebook today. It's a long read. Sometimes painful because there are very slight similarities with feelings that arise when you parent one of our kids. But then, you find yourself thinking.....Holy SHIT! We have a good life and you feel for this poor soul and her daughter. And then, right at the end, you no longer think of her as a poor soul......because there are times when she doesn't.

Please read this BLOG....for Jessica.

The Merry-Go-Round of My Mind

2010-07-29T13:20:00.003+10:00

I'm not sure what I am thinking right now but I do feel that if I just start writing, I'll get my mind around it and sort everything out.

Ayla had her first day at Giralang Preschool today. It was a really nice day for her. The kids are lovely, the parents are lovely and the two teachers are great too. It's a nice small group of kids from a few different backgrounds....Australian, Indian, Serbian etc. We met the most gorgeous little boy who was also there for his first day. He's from Serbia and he's only 3 1/2 years old. Non-English speaking kids can come into preschool a year early for half days to help them pick up the English language ready for preschool the following year. He was super animated and he definitely had the words "scuss me" and "come, come" totally sorted!

Ayla's favourite part of the morning was playing with Lego....which really just involved tipping it all over the place and attempting to eat it....and they played a parachute game. They have this big colourful parachute type thing where half the kids sit underneath it and squeal and giggle while the other half lift it up and down and shake it all about. Ayla did a lot of squealing and giggling.

But halfway through the morning, I kept having this niggling feeling that this wasn't the right place for Ayla. Don't get me wrong, everybody is great with her and they are welcoming and friendly. Just what we wanted. I don't know. It could just be that it is VERY different to what we're used to and we just need to adjust or it could be that my gut instinct is spot on.

I can't help feeling that this environment isn't going to offer the right challenges for Ayla. The other kids love it and you can see how they are challenged with their 'learning'. For instance, today the kids learned the difference between an Author and an Illustrator. And that's great....but perhaps not for Ayla. Ayla needs to be pushed to explore her physical limits....you know.....stepping, standing, clapping, grasping, holding, throwing, pointing, verbalising or learning expression through augmentative communication. All of these kids already have that....now they're being taught to sit still and be quiet! LOL!

Anyway....I guess I was just using this as a sounding board while I order my thoughts. And in any case, tomorrow is Daddy's day at preschool and I think I should wait and see what he thinks. Feel free to make suggestions.....

Word 'Minimal' Wednesday

2010-07-28T20:34:00.005+10:00

I have seen on some blogs, that they have a Wordless Wednesday. I really like this idea but seriously.......I find it very difficult to say nothing! So, I'm changing it to Word 'Minimal' Wednesday....until I find a more catchy name :)

So here it is.....these are photos of what we see on our walks. The Canberra walkways are fabulous and there are lots of walks between the suburbs where you don't even hear traffic or see a road.

Make a Wish

2010-07-23T14:52:00.002+10:00

And now my baby girl is a big girl of 5 years old.

I had the slightest little glimmer that Ayla may have understood the 'specialness' of her birthday this year. The night before, I said to her on several occasions...."It's your birthday tomorrow! And we are going to the Zoo for your birthday", and I actually received smiles and excitement in return! Or maybe that was just the cheeky mood she was in. At one stage, I found that she had rolled into my bedroom and was happily playing with one of her birthday presents! NOT FUNNY!

Ayla's reaction to, "Wanna go to the Zoo?"

It was a really lovely day with the three of us together....although a little tired. Ayla had played bedroom olympics in her bed until around 9pm....way past her bedtime, I stayed up until 12.30am finishing her birthday Owl (see below) and poor Steven was on his last shift of 7pm -7am. The poor bugger. His work colleagues all told him to stay awake all day and go to bed at night so that he wasn't awake all night....so of course, Ayla and I dragged him all around the National Zoo for the day! He was running into things, tripping over his feet and going the wrong way up paths.....but he made it through the day.

Ayla noticed a lot more animals on this trip than she did at Taronga Zoo a year ago. She saw the Giraffe this time, the otters who were so darn cute begging the keeper for more prawns and pilchards, the swans and the white lions too. It was encouraging enough that we bought her a 1 year pass for the zoo, so we can keep going and keep showing her some amazing animals. And no, alas, I didn't 'Meet-a-Cheetah' this time around.....next time (ssshhh!)

I know you're wondering what we settled on for Ayla's birthday gifts after my traumatic shopping trip to Toys R Us....to be honest, I'm not sure why I even went there....ugh! As you have seen above, I made one gift...a birthday Owl. I'm very proud of my first attempt at a softie. Of course, it was my favourite present :). I think Ayla has looked at it once (LOL!). We also bought her a Fairy Dust Wand in all rainbow colours (the toy she was playing with the night before), a gorgeous book with CD called the Wonky Donkey (absolutely hilarious!) and ....... a Singing Potty! Yep, you heard that right.....a SINGING POTTY! I set it all up and Ayla actually used it last night.....but I forgot to turn it on! I couldn't believe it.

The Birthday cake???? Ahhh Sweet Success! Gluten Free White Chocolate Fondants with Raspberry Cheesecake Ice-cream. When someone says it can't be done....don't believe a word of it! It worked and it was beautiful. The photos aren't fabulous.....night photography and I are not really friends. Not only that but my attempt at plating up 'Masterchef' style was pitiful :). But it was delicious and I will absolutely share the recipe in another blog post...cos this one is getting a little long.

But the BEST birthday gift by far?

Finding a really beautiful little mainstream school that can't wait to have Ayla enrolled! Seriously! No hesitations whatsoever! And they have jumped in and begun contacting all the right people for Ayla's school support already.....but I might leave the details for another blog. This one is getting to 'cup of tea' length!

5

2010-07-18T20:32:00.002+10:00

This image is courtesy of the blog "A Recipe for Aperture"

This week, the Little Mrs (aka Ayla) turns 5. FIVE! We are in a strange town, in a strange state but this birthday is going to ROCK!

We're taking Ayla to the National Zoo on the day...would it be selfish to want to take advantage of this opportunity and spoil myself with a 15 min session patting a cheetah?? And then we're going to cap the day off with something totally decadent.....White Chocolate Fondant Puddings with home-made raspberry ice-cream! Gluten-free of course! Do I have a recipe? Well...not exactly. I'm hoping to wing it ;) I'm going to base it on this recipe but we'll see how we go.

I'm feeling much more positive about Ayla's birthday this week. Last week I started to spiral into a little pit for a day or 2. Not because she's turning 5 but because shopping for her birthday present was just plain traumatic. I thought it was going to be fun and I was really excited about it. I left Ayla at home with Steven and went off on the shopping expedition myself. I went straight to Toys R Us and prepared to go crazy. As I walked through the aisles I could feel a panic attack starting. I truly don't want to think what the look on my face was. My mum always said that I could never I hide what I was feeling because it was all over my face. I can only imagine that the look on my face reflected the pain and the panic that I was feeling. I always end up in the same section, year after year. The baby section. I keep thinking that we're moving past this stage and into more mature toys...but we're not. It's the same toys for the same age group. Every year we buy her another version of a toy that she has had before.

It's strange because we can see that she's coming ahead in leaps and bounds....except for this area. We have to be so careful because she puts everything in her mouth so there are a lot of toys (bought and hand-made) that are just out of the question.

Anyway....onwards and upwards! You will see on Thursday (or Friday) what I finally settled on for her gift. We're looking forward to our visit to the zoo....and secretly hoping that Ayla notices more animals than she did at Taronga :) And it will be my moment of truth with her birthday 'pudding'......let's hope the universe is with me on the creative front that day!

A little side note.......Happy Birthday to Little Miss Alice who shares her birthday with Ayla!

Welcome Home

2010-07-09T14:47:00.005+10:00

We have finally made it to our new home in the ACT and it is surprisingly not as cold as I was expecting. Strangely enough, it feels very similar to Mount Tamborine.....apart from the carpet of ice on the car and the grass each morning! Frost is most definitely a novelty when you have lived in largely frost-free areas of Queensland for most of your life....and you no longer have a garden to be concerned about. The photos were taken on the very first morning of frost that we had in Canberra. I probably looked like a dill taking photos of it in my pyjamas, especially when Steven was sitting in the car waiting for me to drive him to work :).

Further to my last blog......Ayla didn't have whooping cough. A blood test told us so but in all honesty, sometimes when she was coughing, I wasn't so sure. But it's all over now and I think we are all starting to feel pretty normal again.

Ayla has settled in to her new home extremely well. She really is quite amazing with the things that she copes with. It seemed she was happy to call home anywhere that there was both her Mummy and her Daddy present. She's been all filled up with 'Daddy play' - squealing, giggling, and playing rough every morning and night and today she even went shopping with Daddy. Her first contact with Steven when we arrived in Canberra was really sweet. For a moment she just sat in her carseat staring through the window at him and taking it all in. Then it was as though the sun suddenly burst from behind the clouds and she was all smiles and wanting to be picked up.

With Ayla's Daddy time...comes Mummy's 'alone time' and it has been a joy to sit back and quietly watch them happily playing again but to be able to cook a meal without having to leave the kitchen every few minutes to provide entertainment to a tired and bored child really has put enjoyment back into the smallest of daily tasks.

There is so much to share with you but I'm finding this post is starting to become a little garbled with information. It's starting to look a little like our house! Boxes all over the place and most of them not where they are supposed to be :)

It's nice to back and you can be sure that there will be plenty of updates to come.

What's my name???

2010-06-22T17:15:00.002+10:00

Holy Dooley! As much as I don't want to....I am going to have to take a little 2 week break from Blogging.

We have finally been offered a house to rent in Canberra. Thankfully it is a nice one. There were a few dramas with us missing out on rental properties because we didn't have rental references. It's a little difficult to have them when you have owned your own home for over 10 years. We were told on a couple of occasions that we "had an excellent application but we have given the property to a couple with references". It was more than a little frustrating.

Anyhow, we now have one and I am leaving our humble little home on the mountain next Thursday, 1st July and heading for our new life in the nation's capital.

In the meantime, I am awaiting tests results for Ayla whom we suspect has whooping cough....oh the joy of sleepless nights coupled with the stress of moving interstate.

I am tired....nay exhausted, I am fighting off a sore throat and I am so riddled with anxiety over everything that still needs to be done that I find myself frequently asking.....Ummmm....what's my name again?

Will fill you all in after the move!

On Pieces of Filth

2010-06-10T22:48:00.002+10:00

The last 2 weeks have been really hard with Steven away. I feel like I am just surviving on adrenalin.

I thought I had cured it tonight when I had a couple of friends over for a 'stitch in' downstairs. We all get the sewing machines out, the projects we're working on, a cuppa and some munchies. We chat and laugh and sew. When the girls left tonight I felt totally relaxed and ready for bed. Did a quick check on Facebook and saw that Steven was on so we had a little chat. Now I'm seriously fired up and ready for a freakin' fight! It wasn't Steven...but something happened down there tonight that has my blood BOILING!

Steven went to a training session with someone that he thought he knew. The guy treated him badly from the moment he walked in. An argument started and then the guy says blah blah blah 'and your Disabled Daughter'......please accept my apologies for what I am about to say.....

WHAT THE FUCK!!!!!!! How dare you! How dare you mention her! How dare you use her in derogatory manner! How dare you refer to her in derogatory manner! You low down piece of shit on my shoe!!!!! I cannot believe that there is this type of scum in the world that breathe my air....and Ayla's.....and pollute it with their foul and distasteful breath!

As I said....I apologise if you are offended but OMG! I needed to get that out before I went to bed.

Steven was VERY well behaved. He dropped his bagged and went at him but only belted him with words which is lucky considering the talks that were given at work today.

Nuff said.....but unfortunately, I am still steaming!

Real Food Companions

2010-06-05T18:48:00.005+10:00

This blog is becoming a beautiful eclectic mix of everything that I love in my life. My husband, my daughter, my Mum and Dad, my little brother (I must put him in here somewhere), friends, craft, photographs, and something that is coming back into the list of priorities in my life......food. Not just any ole food that you shove in your mouth and swallow in front of the TV. I mean REAL food. Nourishing food, prepared from scratch and made with love. Consumed at the table and shared with family, friends and good conversation.

We recently had a working bee in the yard at our place, trying to get the place rent ready. A big group of friends all working and socialising in the garden. The kids running around squealing and playing, Ayla eating leaves and dirt. It was so wonderful to be surrounded by everyone. Lunch time came and I found myself sitting amongst friends, kids and adults alike, all hoeing into a beautiful nourishing lunch that I had made from scratch a few days earlier. It wasn't hard work. I cooked both meals in a slow cooker and put them back into slow cookers the morning of the working bee. We had a Vege and Chickpea Curry for the vego's and Ham and Bean soup. But the best part was the friends all sitting together, enjoying a home cooked nourishing meal. Slurping, spoons clanging against crockery, kids chittering to each other and cracking jokes, and good old fashioned conversation.

Well, this is all a very long introduction into what I really wanted to share. I was recently given a gift voucher for a book store for my birthday (Thanks Nessy!) and I raced out the very next day to purchase an amazing book. "The Real Food Companion" by Matthew Evans. SENSATIONAL! Matthew is an Australian chef, residing in Tasmania with his family. He milks his own cow each day! I would love that.

I have been reading his 'Cookbook' from cover to cover. It is seriously so much more than a cookbook. Amazing recipes from real ingredients......Yes! Explanations of Real Food, Local food, Sustainable food.....Yes, Yes and Yes! But so much more. This book has HEART. From the moment I read Matthew's prologue, I knew this would be one of my most favourite books EVER! So, I wanted to share an excerpt from his prologue with you.

"As I was finishing writing this book, I was also awaiting the birth of my first child, and realised that by the time he could read it, the world may well have changed. As I sit at my desk it looks like rain outside, but the land west of the Great Divide, over three quarters of New South Wales, is in drought. The Arctic's north-west passage is free enough of ice for the first time in recorded history for ships to pass through, and there's much debate about the Greenhouse Effect and other big questions floating around about sustainability and responsibility.

Down through the ages, through war and natural disasters, in times of peace and plenty, some things remain constant. The need to keep the family together, to bind social ties, to laugh like a crazy person at family jokes that no one else gets or to weep, bereft at the loss of a loved one or pet. It's important to live.

Into this glorious life, my child, I suggest you take a good sense of humour, a good heart and yes, as you guessed from a person of my obesession, a good knowledge of food. The how, the why, the where. In challenging times it will comfort you. In happy times it will uplift and sustain you. At all times show respect for yourself and what you put into your body and you will find strength and happiness. Dine in front of the television at your own peril. Keep your self-esteem intact and your front door open to visitors. Keep the pantry full and the larder enriched. Keep the invitations going to those who seek refuge, as well as those who come to bring joy. Be generous with the ladle and cavalier with the wine. Cook, my child, for hospitality is the glue that binds humanity together".

Dare I say that this man is my newest hero! Move over Jamie Oliver....this man is definitely on par with you in the Hero stakes!

For All the Single Parents Out There.....

2010-06-05T16:14:00.002+10:00

For all the single parents out there.....on my knees and bowing obeisantly to all of you!!!!

Far out. I am 1 week in and I am so exhausted that I already feel run down. I have a cold, my eyes are burning they're so tired and a cup of tea along with 5 minutes on the couch has become my most favourite thing in the world....even if it's a little elusive.

Ayla is connected up to her ABR machine for the first time in 4 weeks..... you know waaaaay back when we were having a few problems with her and tiredness....well, I have only just come back to it. Life is crazy and I just have to keep reminding myself to go easy.

I was going to elaborate and give you an example of my day.....but that would be showing off! :) No, seriously, it's not something that I'm going to be able to maintain. This week I just decided that I would try to do things as they came up instead of putting them off for a day or so. By doing this, I am hoping that in a week or so, things might settle down. Will let you know how I go with that!

Steven is all hooked up with Skype and has spoken to Ayla a couple of times. It was strange because she didn't give the same reaction as she does with Grandma. She usually just giggles the whole time but you could kind of see confusion in her expression and she didn't have a lot to say. Other than that she seems ok with everything and as with most kids....completely oblivious to my crazy rushing around. So I guess everything is normal around here.

Over and out!

Table for 3

2010-05-28T16:48:00.003+10:00

It was my birthday yesterday and my husband leaves for Canberra tomorrow......so today, I insisted on lunch. A really spesh lunch! We went to, what we consider to be, the BEST restaurant in all of SE Queensland. Songbirds Rainforest Retreat. I'm drooling thinking about it.

It was supposed to be a quiet lunch for 2 to celebrate my birthday, Steven's fabulous new job opportunity and his somewhat bittersweet farewell. Only bitter because it means being temporarily separated but oh so sweet because it has finally signalled a change in our fortunes.

Ayla is normally at Kindy on Fridays, hence the quiet lunch for 2. Nuh-uh.....Ayla's support worker was sick today and the kindy is in the middle of a huge 3 year audit. There were no spare hands to help today. So, Ayla joined us for lunch. Which was just perfect. Despite being well overdue for her own lunch and it being waaaaaaay past her nap time, she was quite the amazing dinner guest. And I am so thankful that Kimmy (her support worker) was sick today because I was able to get these beautiful shots of Ayla with her favourite person in the whole world. These photos will be something for all of to cherish in the coming weeks.

And Shan...thanks for the skype suggestion. I don't know why we didn't think of it before. Steven is currently at Dick Smith buying a webcam and headset.

And so it begins....

2010-05-25T19:51:00.003+10:00

Far out....time really does fly. It's only 4 days now until Steven leaves us and moves to Canberra to start his new job with the Public Service. Did you notice how I said "Steven leaves us"? I think I'm starting to freak out about it :). I've never looked at it like that previously.....but I am now.

We don't know how long it will be until Ayla and I can move down and join Daddy. It could be 2 weeks or it could even be 12 weeks. The worst part is that there is no spare cash for us to see Steven even once during that time.

Ayla is Daddy's girl through and through and I think she will really miss him terribly.

*sigh*....will let you know how we go saying goodbye on Saturday.

Picked it up at Kindy.....

2010-05-16T06:35:00.002+10:00

I think we have our first 'picked it up at Kindy' illness. Yay us!!

We have been up several times during the night with Ayla due to vomitting. Ugh. Poor Steven had only just walked through the door after finishing work at around 1 am and found Ayla in the bath and me cleaning up vomit. We were up again about 30 minutes later doing it all again. I even had to have a shower. You know that feeling that you have vomit in more places than just your hands? No amount of handwashing is going to get rid of those other vomitty bits, hence the shower.

So here I am, in the early hours of the morning, and we have just finished another vomit clean-up session. What else would you do??? Blog it, of course! I think I am just too tired to go back to sleep, only to be woken again. Doesn't matter. It probably won't last long.

Ayla has been such a little champ all through the night. No crying. You just wake to the sound of vomitting and her little sounds of ultimate disgust in what she is lying in. The bath makes everything better. She was even giggling while she was in there.

Clearly, the photo at the top has NOTHING to do with this blog. I was fairly sure you didn't need a photo of vomit :). I took this photo at Kindy on Friday morning. The lady in the photo is Kimmy. Ayla adores her. When we arrive at Kindy, Kimmy comes up to us and Ayla literally jumps out of my arms to her. It's so nice to know that she loves Kindy and even the person that is responsible for caring for her. This is one of the things that I am very sad to leave behind.

This Nourished Home

2010-05-12T13:11:00.004+10:00

Breakfast at Our House (photo courtesy of Nourished Kitchen)

For the past 28 days our little family has been taking part in a 28 day Real Food Challenge. That kinda sounds like we suddenly and drastically changed our diet for 28 days and now we're going to revert back. In actuality, we have been eating like this for years....well, at least Ayla and I have. This was an opportunity for me to expand in my knowledge of nutrition, expand my recipe repertoire and learn to be more organised in my food preparation....sometimes days in advance, and also an opportunity for Steven to play along with us. I can honestly say that we do not have 1 pre-packaged item of food in our pantry that contains more than 1 ingredient. We have bottles of herbs and spices, olive oil and balsamic vinegar....but that's it. The rest of it is gluten free grains, home-milled flours, dried legumes, potatoes, onions, garlic, celtic sea salt, and some dried fruits. It is really very liberating to know that I am no longer a slave to the food giants and that my family is happy, healthy and eating real food that nourishes our bodies and our minds.

I have been feeling just a little shy of bloody fantastic of late. Despite my healthy diet of the last 8 or so years, I often felt tired (no, exhausted), down in the dumps, unable to cope with much of anything, lethargic....I'm not going to go on because it's even boring me. I'm not saying that I am bouncing out of bed in the mornings.....actually, now that I think of it....I am! I am up between 6 and 6.30 each morning, no alarm, Ayla still asleep and ready to face the day. Wow! That was something that I hadn't thought of until just now. I haven't had a truly down, negative and 'oh poor me' day in weeks. I am putting this all down to the real food challenge and learning (once again), exactly how important it is that our grains, nuts, seeds and legumes are all soaked and/or sprouted before being eaten. That all of the delicious and health giving fats like butter, olive oil, cream, egg yolks, bone marrow, fish eggs, and whole fresh raw milk are absolutely ESSENTIAL to our health and well being....despite what the diet dictocrats try to 'teach' us. I haven't taken a supplement of any kind in 4 weeks. I usually live on Adrenoplex to prevent me from crashing in a big blubbering heap. I breezed through my last menstrual cycle! I feel really great!

Steven says he's a little hungry but I think that is because he's not quite grasping that his meals and snacks need more preparation....there is no quick packaged snack that he can eat right NOW. Waiting until you feel hungry is going to leave you....well, hungry. Once you have reached that point, you're just looking for a quick fix of something resembling food. Eating real food does require planning and cooking ahead.

Ayla seems to be doing well on it. Most of the new recipes we have tried, she likes/loves. Some she's not so fussed on. They're usually the foods that contain fruit! I give up...the kid doesn't eat fruit....alright, I get it! The last week has been a super challenge with Ayla. At first we thought she may have been getting sick. Refusing to eat dinner (unheard of), crying in the bathtub (I know you don't believe me), crying all through book reading and not letting me leave her to go to sleep by herself (yes, I'm sure she hasn't been swapped with an alien). As I said, we thought she might be getting sick. But she's not. No signs of illness at all. Sunday night (day 6) I started to realise that it was actually behavioural and she was trying to tell me something.....I still don't know what! Does that make me a bad mother??? Anyway, on Monday she had a 4 1/2 hour nap.....I think she is just plain exhausted. She has a massive day on Tuesdays at the special ed unit. They work them really hard all day and then at the end they do hydrotherapy. She leaves at 8am and doesn't get home until 3.30 - 4.00pm, eats and goes to bed for the night. Then on Thursday and Friday she has Kindy all day and sometimes without a sleep. Add to this all of the ABR that we have been so desperately trying to keep up with.....The kid's tired! I stopped all ABR on Monday and Tuesday and we have mildly better afternoons and evenings. We have only done 1 session this morning and I will do 1 more this afternoon and see how we go.

Anyway...this has turned into quite a lengthy 'novel' and if I keep going I will have nothing to share with you later :)

Choice

2010-05-06T18:31:00.005+10:00

I have been wanting to get on here and share something ALL day....ever since around 6 am in fact.

I woke this morning and did my usual rounds of facebook, entered some stuff into Etsy, checked my email......Checked my EMAIL!!! I WON!!!!! No, it wasn't one of those Nigerian Lottery scams. I actually won something. I never win anything.

Do you remember last year....November to be more precise.....we officially switched over to this 'all shiny and new' blog so that we could take advantage of a 10% discount off our ABR machine hire each year? If you need a refresher, just click HERE:) Well, I have been steadily blogging away and I received my 10% of machine hire at the last workshop. But I had been enjoying the cathartic nature of blogging so much that I had completely forgotten about this little gem:

In this 'blogging campaign' that's being undertaken by the parents there is an opportunity to win our machine hire FREE for 3 months!!! That's the incentive we are all going after I'm sure. It's worth $1086AU, and when you're paying up to $25 000 per year for a therapy (including flights and accommodation), that really is worth blogging about.

WE WON! WE WON! WE WON! I nearly fell off my chair this morning, when I read that message. Do you wanna see it? OK!

Hello Families!

I hope everyone is doing well and practicing your new exercises! Everyone has been working hard on their blogs, and the results are really showing. The time has come to announce the winners of our first bi-annual blogging campaign competition! As everyone knows, the winner of this bi-annual blogging campaign competition will receive 3 months of machine rental for FREE. But we have a surprise for everyone! Everyone worked so hard on their blogs, so we decided to give out ANOTHER award! This award goes out to the most progressive blog-- the blog that has gone above and beyond to try and make their blog successful. The winner of the most progressive award will receive ONE month of machine rental for FREE!

The winner of the BEST blog is Melissa and Ayla Luxmoore!

And the winner of the most PROGRESSIVE blog goes to Jenny and Kirrily MacMohan!

Congratulations to the both of you!

As for the rest of you, don't be discouraged! As long as you kept up with the blogging guidelines, you will receive the 10% discount off for machine rental for each month that you participate in the blogging campaign! Great job families and keep working hard on the blogging campaign! The next winner will be announced in October! I look forward to reading more of your blog posts. :)

--
Cheers!
Rachel

YeeHa! I can't believe that all of my public whinging and whining (ahem....sharing) has saved us $1086! As our Kiwi cousins across the ditch would say....Choice!

We Have News.....drumroll please.....

2010-05-04T12:51:00.004+10:00

Ok, so Steven has told me that I can officially start telling people our news! Woohoo....how about we make it a guessing game?

We're starting a botannical garden???.....aaahh....No. How about this one?

Going on Holidays? ......in my dreams!

Ok, this one should get you closer.....

Yes, it's Canberra. No, we're still not going on holidays. Actually, WE'RE MOVING!
Yep, MOVING!

There, I said it....now you all know our news :). Steven has taken a job with the Public Service and Ayla and I are so very proud of him. He has been so patient waiting for this to come up. His first application was exactly 2 years ago and it has been a very long and frustrating process. I think he has enjoyed the simplicity of working in hospitality for the past couple of years and its close proximity to home but he's totally done with it now and ready to go back to a profession.

You're probably wondering how I feel about it....Excited! There are some parts of me that are a little nervous (mainly about the move itself) and a little sad about leaving the familiarity of an area that I have lived in for around 13 years. Sad about moving away from friends, old and new. I'm also a little nervous about having to start all over again with Ayla's schooling and friends etc. The older the kids get, the more questions they ask and the more capable they are of forming judgements. But, all in all, we are very excited....especially about the possibility of getting on a snowboard again and taking Ayla toboganning (spelling???).

Steven leaves on May 29th (yes, less than 4 weeks away) and we will follow him, hopefully, 2 - 4 weeks later.

That's it for now....I feel much better now that you all know!

Big Brunch and the Red Hen

2010-05-02T18:15:00.004+10:00

No, we didn't eat the red hen for brunch.....We went to the Red Hen for Brunch with some really special friends this morning.

We haven't done this in aaaages....let's face it, we're not exactly flush with cash lately. That is hopefully about to change.....oooo we have news.....can't share it yet....soon though.

Anyway back to my brunch story. This was brunch with some very special friends who we have been through some times with. Our kids have completely different conditions, completely different stories, completely different futures.....and yet, our friendship began with something we have in common. A little ole school called Xavier. Xavier Special Ed was where we all met each other and forged a beautiful friendship of love, laughter and understanding.

The other little girl in this photo is Ayla's friend, Lucia (and her daddy, Tony, in the background). Lucia has a VERY rare condition called Netherton Syndrome. There's a little linky there if you would like to read about it. Some of you may remember Lucia from some very early blog posts as she and her family were about to set off to Austria to teach Lucia how to eat. Long story but in a nutshell, Lucia basically had a medically induced 'eating disorder' due to needing to be fed through a 'button' that delivered food straight into her stomach. The result was that she was completely terrified of swallowing food. Capable but terrified. As you can see in the photos.....she's now woofing down anything that looks delicious! She even shared some of her brunch with Ayla today....Ayla gives her a pretty good run for her money.

So we all caught up at the Red Hen for a gorgeous brunch. Ayla managed to devour half of mine, half of Steven's and a few tidbits from Lucia's plate too. It was almost like old times. Ayla used to steal whatever Lucia wouldn't eat at school....which was all of it :).

So, I guess this is just a post to say we had a really lovely day with some really lovely friends and some really beautiful little girls.

ABR Improvement #4

2010-04-28T11:35:00.005+10:00

So we're starting to get into the improvements that are a little more subtle now, but no less amazing.

This improvement centres around Ayla's hip mobility and her ability to bend forward from the hips. Here's a photo from November 09:

You may be able to see that in order for Ayla bend forward from the hips, she needed to raise her bottom off the table. This also meant that she would overbalance and fall forward off the table so the person challenging her needed to hold her high up on her arms to control her movement.

Here we are in April 2010:

This photo may not look much different to you guys but I was there to watch her challenged in this position both times and the difference is really astounding. Her bottom doesn't need to lift as far off the table and her 'helper' is only holding her wrists. Not only that, but I noticed that when she was moving into this position, Ayla showed much less apprehension about bending forward because she knew she was more stable.

So there you have it! ABR improvment number 4....done!

And Another Opportunity to Keep it Real

2010-04-24T09:06:00.003+10:00

And another stunning opportunity to keep it real and something we all experience....

Andrew Bolt is a blogger who also writes columns Melbourne's Herald Sun, Sydney's Daily Telegraph and Adelaide's Advertiser.

A mother writes of waste and filling forms

Saturday, April 24, 2010 at 12:04am

Kevin Rudd is spending up to $1 billion to fix the disaster he caused by spending $1.5 billion on often useless, unnecessary or dangerous insulation.

Meanwhile reader Elizabeth wonders how many more forms she must fill in for the Rudd Government - and how very often - to keep getting a carer’s pension of just over $100 a fortnight for looking after her autistic son:

Dear Andrew,

My name is Elizabeth and I am a 39yo married mother of three boys aged 17, 13 & 7. My husband is an accountant who works full time for and although I am a university qualified accountant, I work as a Family Day Carer, currently working a 36 hour week. I enjoy working with and caring for the children that I have and get great support from my Family Day Care scheme, however the primary reason that I began working as a Family Day Carer was so that I was able to work and at the same time care, for our youngest son Nicholas, who has autism, an intellectual disability and epilepsy. We are very lucky in that his developmental issues were picked up early and although his autism was not officially diagnosed until last year (meaning that we missed out on the Federal Government’s Autism package for those under 7), we received early intervention services for him since he was three years old.

He is a delightful child in his own way – he enjoys playing sport more than anything else in the world. He is not yet able to join in teams as he cannot understand the rules, the need to do follow the rules or even why he has to share the ball around. However we do the best that we can to expose him to as much of it as possible. As much as Nicholas is delightful, he is also not easy to care for. As with most children with autism, he has little concern or understanding of the feelings of others. He repeatedly tells us that he hates us, or doesn’t love us, or will tell either my husband or myself to find a new place to live. He told me that God shouldn’t have made me his mum, because he didn’t want me, and that when he wakes up in the morning I should be gone. I know that he doesn’t really understand, but is still heartbreaking. He finds reading particularly difficult and is in the reading recovery program at school, but each night he ‘melts down’ when it is time to read the reader and get some homework done. Most days are one big argument with him refusing to get out of bed, eat breakfast, get dressed or showered, put shoes on, clean his teeth, eat his lunch, drink his drink, hold hands while crossing roads, do homework, eat dinner, put a jumper on, take a jumper off, listen to a story, go to bed, go out, get in the car, get out of the car, say hello to people who say hello to him or give his parents a hug (let alone a kiss). And this is tiring. Very, very tiring.

We have the help of a psychologist (who is amazing) but at $150 per hour we can only afford so many visits to her each year (only half is rebateable by Medicare). The medication (melatonin capsules) that we give him to get him to sleep (otherwise he will still be up at 11.30pm) has just gone from $36 to $43 for 30 capsules. His occupational therapist that we need for various issues such as toileting (he is still not night trained and has a fear of defecating), distal tremors, handwriting and other fine motor skill issues costs us in excess of $100 per hour.

But all of this is okay because each fortnight the government gives us a Carer Allowance of just over $100 per fortnight. I know that you are probably thinking that $100 a fortnight is good money, and it is, and we are grateful for it, but it doesn’t come close to covering the costs that we incur in raising Nicholas. To help him cope at school, both with the routines, expectations, and the social side, we have to write ‘social stories’ for him and if we are lucky he will let us read them to him! We do this in the hope that he will get something out of them that will help him at school and in life. We need books and other resources to help us do all of this. We stay up way after midnight writing these stories and attaching the appropriate visuals, printing them and laminating them so that he can’t rip them during an autistic ‘meltdown’. We need specialists such as the ones mentioned above. We need medication to make him sleep and medication to stop seizures as well as oodles of stickers for sticker charts for desirable behaviour. We need ear plugs for him for the football because although he loves going and watching he cannot cope with the noise due to sensory sensitivity. We have to make sure that we sit in the same place each time so that he knows where we are. He has to eat the same food each time because this is his ‘football food’. We have to go the football using the same route or he becomes anxious about where we are going.

And today in the mail I received yet another letter from Centrelink telling me that I must ring them and inform them that I still care for Nicholas and whether he has spent any nights in respite care or hospital recently, or they would cut our allowance. This is on top of the forms that I have to fill out each year or so regarding all the areas of his development. This form goes for pages and pages and on it I must mark what Nicholas can (and therefore by default, cannot) do. Then his paediatrician must also fill out a similar form and return it to me. If I do not get these forms back to Centrelink within 3 weeks of receiving them, they will cut our Allowance and he will lose his Health Care Card. Andrew, he is autistic. He is intellectually disabled. He may grow out of his epilepsy, but he will always be intellectually disabled and autistic. He will never live the life that most people do, he will never be able to do what his brothers do. He most likely will need to be cared for to some degree for the rest of his life. And as far as respite goes – what respite? We cannot leave him with anyone, he simply wouldn’t cope. (And it’s not as if the offers are flooding in, either.) I have spent one night away from him since he was born seven and a half years ago and then I was in hospital, after collapsing with exhaustion and falling face first onto the floor smashing my face and breaking my nose, my husband and children finding me unconscious in a pool of blood. I cannot understand why the government insists on me having to continue to fill out these forms and ring them to confirm that I am not ripping off the system. Each time I look at them and see the items that he is capable of doing, and see the huge number of things on the list that he cannot do, it is like my heart is being ripped out. I cry for days, but I keep going because my children need me.

The Government wastes so much money. Money that would pay for the Carer Allowance for a family of a disabled child, money that would pay for some respite care for parents with disabled children (and the siblings) who just never get a break, money that would pay for more services such as speech therapy, psychologists, occupational therapists. And yet, the government is worried about whether I have had respite from my child without letting them know. Do they really think that I have the time and the energy to try to think of ways to rip off the welfare system?

I will continue to fill out forms as I am asked. I will continue to ring when I am told. I will continue to be slapped in the face by my child’s disability and I will no doubt, continue to cry on occasion. And I will do this because it is what is best for my child and my family. But I cannot stay silent any longer. I am telling you this story in the hope that you find it all as unfair and frustrating as I do, and in the hope that should you choose to write or talk about it, people’s eyes will be opened. Not only to the struggles of families like mine, but also to yet another example of wasted resources and an uncaring and insensitive government.

I apologise for the length of this email and know that I have rambled, but thank you sincerely for taking the time to read it.

Yours truly,

Elizabeth

Is it just coincidence that this EXACT topic was discussed with Ayla's Speech Therapist and Physio this week? That it has also been a topic of conversation amongst friends 'in the know' this week? Maybe it's just that we all received these pointless reams of paperwork to complete this week.

YES! My daughter still has a disability....something tells me that this isn't going to change in my lifetime.

Build a Bridge? I think not....

2010-04-22T18:06:00.003+10:00

Do you remember way back in the beginning of my very first blogs where I said that I wanted this to be a space for 'keeping it real'? 'It' being life as a special needs parent. Although I still have some ABR improvements to share with you all, I was reminded of my promise last week and feel like that reminder needs to be shared.

I am a forum member of a Yahoo forum specifically set up for parents of children with Cerebral Palsy in Australia. It's a place where we can ask questions, find out information, we can post information that we think might help someone or we can speak openly about the trials and tribulations of being one of these "CPecial Parents", without judgement. In other words....we're amongst friends that get us.

Last week, one of my CPecial Friends posted something on the forum that left us all close to tears (if not bawling). It was something that we have ALL felt at some time but have possibly never put words behind. The post was titled, "I Hate My Life". Well, SHIT! If that doesn't just say it all. Do I feel this right now? Well, no. All is well at the moment. Have I felt this before?..........you seriously have NO idea how many times.

So, in the interests of 'keeping it real' and truly sharing what it is like to be a Specials Needs parent, I have quoted below the forum post from my CPecial Friend, with permission, of course. I have removed all of the names of her family members for the sake of privacy.

Hi Cpecialfriends,

Does anybody else hate their life? I'm sick of getting up every morning and have nothing to look forward to. I'm really starting to resent what I have to do to take care of (my daughter) and also that (my husband) gets to get up and go to work most days and is doing what he wants to do. Its not so much the physical demands of (my daughter), its more the behavioural/emotional and seizures that really gets to me.

Do any of you feel like this and what do you do about it. I've been seeing a Psychologist for the past few mths as I haven't been coping with things, and we've been talking about my feelings about my life and how unfulfilled I'm feeling. I have always told myself that what I'm doing for (my daughter) is the most important thing to me and therefore that is the meaning in my life, but I've come to realise that deep down it isn't.

Do I try to find something more fulifilling which might mean less commitment to (my daughter), or do I just build a bridge and get over it. Am I entitled to find a life that makes me happy, or should I find some way of accepting that this is my life, there is nothing I can do about it and that I will hopefully find happiness in Heaven.

I'm sorry to burden you all with these thoughts/feelings at this early hour but its probabaly the only chance that I'll get to post, and I've been trying to post about it for a few days now.

I would really like to hear what you think even if you think its not what I want to hear.

CPecial Friend (you know who you are), thank you so much for posting your true thoughts and feelings and allowing us all to benefit from your honesty. I only hope that we (your fellow CPecial Friends) were able to help you too.

If you are the parent of a child with Cerebral Palsy (CP) and you live in Australia, feel free to drop by our forum sometime. We would love to meet you and your little ones and you never know, you just might find some kindred spirits.

ABR Therapy Improvement #3

2010-04-19T19:20:00.004+10:00

So before Masterchef starts (I know I'm a sucker for cooking shows!), I thought I would put up another improvement. Here we go.....November 09:

The position that Ayla is supposed to be in is "Tailor" position....you know, sitting cross-legged. She can do that fine....unless you challenge her with a little shove! Notice how Ayla has kicked her legs out of Tailor position to maintain her balance? Pretty clever but really this is just another way the kids with CP overcompensate for their inability to sit completely independently and maintain it.

And now we see April 2010:

Ta Daaa! A quick shove and she has still maintained her Tailor Position!!!! Yay!....and now I am going to maintain my Tailor position on the couch for Masterchef....seeya.

ABR Therapy Improvement #2

2010-04-15T18:46:00.005+10:00

Here comes another BIG improvement.....

This time we are looking at Ayla's abdominal strength and her ability to control her movement going from sitting to laying down on her back. This is Ayla in November 2009:

You can see in this photo that in order for Ayla to control the backwards movement as she is laid down, she kicks her legs up to balance her weight in an attempt to gain more control.

And in this photo....

She almost has a 6 pack!!! No, seriously.....look at those bulging Ab muscles. She is keeping her legs down and letting her abdominal muscles control the movement backwards. sigh What a champ.

Oh and by the way....today for lunch, Ayla happily ate last night's dinner. Told you it was yummy.

Love it when a plan comes together

2010-04-14T17:29:00.003+10:00

Ok, so it wasn't really planned but it was a good title, right??

Whilst the Little Mrs (Ayla) was throwing her nightly tantrum tonight I managed to somewhat 'zone-out' and throw together a crazy yummy meal, so I thought I would share it. I would love to say that I took a photo....but I ate it before that even entered my mind. I really wanted a stir-fry tonight but it is becoming increasingly more clear that soy and I are not friends....not even for tamari. So, I have had to get a little creative.

Minty Apple and Pork Stir-fry

1 Pork fillet, thinly sliced
1 Granny smith apple, peeled and diced
2cm Ginger, peeled and cut into matchsticks
1 heaped tsp Tahini
½ tsp mild Curry powder
1 heaped tsp Honey
1 Lime
½ tsp Fennel seeds
¼ cup Chicken stock
Handful Mint leaves, roughly chopped
Stir-fry veges of your choice, julienned.

1. In a medium bowl mix together tahina, curry powder, honey and fennel seeds. Add pork slices and toss around until coated in ‘paste’.
2. Preheat Wok on high heat, add apple, ginger and coated pork and toss around until the pork is almost cooked. Add stock and onion and continue tossing until pork is cooked through.
3. Once pork is cooked through, add all the veges at once except any green leafies. Toss the veges and pork around until the veges begin to soften slightly. You can add a little more stock if you feel that it needs it but keep in mind that this stirfry is meant to be more dry than ‘floating’ in sauce.
4. When the veges are almost softened (but still crisp), toss through the mint leaves and green leafy veges until wilted.
5. Remove from heat and squeeze the juice from 1 lime all over the top of the stir-fry. TA DA!!!
Serve on its own or with rice or quinoa.

Try it....you won't be disappointed! Ayla didn't eat hers but that was because she was too busy crying and telling me it was bathtime. That's ok. The new rule in my house is if you don't eat your dinner you will definitely see it again in tomorrow's lunch :)

On a side note....her tantrums are much more subdued than they were a week ago and mainly because she is tired. Lots of crying and raising her voice but no kicking and thumping the ground yet....Happy days.

Stay tuned for another ABR improvement in the coming days.

ABR Therapy Improvement #1

2010-04-10T13:26:00.004+10:00

Thought I had better start putting up some of our newest improvements from the last ABR workshop.

Each workshop Ayla is 'put through her paces' with a set of movements that are filmed and photographed. It's called the Video Session and the movements are exactly the same for every workshop so that the photographs/video taken can be compared with those taken from her previous workshop. This is just one of the ways that we can visually 'see' the changes that we (her parents/carers/therapists)help Ayla to create.

One of the movements involves sitting Ayla on the edge of a table with her legs dangling over the edge. From this we can get an idea of her stability in this position. The next step is to challenge her by taking her off balance to the side and also backwards. Don't worry! She's never left to freefall.....we always catch her. This is a snapshot of how Ayla coped with being challenged sideways in November 2009:

You can see in this photo that Ayla's entire body moves as one unit as she tries to save herself. She throws out her legs and arms and becomes rigid.

This is the same challenge photographed less than a week ago..... April 2010:

Here we can see that Ayla's trunk and limbs are more 'connected' in that, they work together better and she is better able to segment her movements to support her trunk. Much tidier!

As a side note....Ayla is slowly becoming more relaxed now that we are home. We have had some horrendous nights getting her to sleep. Our first night home was a little ugly. Last night was better and I am putting it out there for BLISS tonight :)

Chocolate for Dinner

2010-04-06T19:01:00.004+10:00

Chocolate for dinner....and it's not even good.

I feel like I have just spent one and half hours somewhere back in my past....about 4 years ago. A time when Ayla was around 7 weeks old and used to cry and scream for hours every night. Seemingly for no reason. She didn't have any pain that we could see. She had a full tummy, a clean nappy and more love than she possibly could ever conceive of having but still, every night from about 4 in the afternoon she would kick, scream, cry, scratch and just generally thrash around for hours, until finally she fell asleep. I remember my midwife giving me this article by Aletha Solter to read around this time and it helped a lot. Especially the bit about not leaving a baby to cry alone. Just being there while she cried.

Tonight, Ayla took me right back there. The kicking, screaming, crying, scratching, thrashing and now add to that biting and pulling hair. All I could do was lay on the bed next to her. It's been a very sleepless few days in Sydney for our ABR workshop. She's been waking every 15 minutes, all night for 2 nights now and this afternoon I could feel myself on a knife edge....the very same knife edge I found myself on daily until Ayla starting sleeping through the night about 3 years ago.

At first I felt angry and frustrated at her response to bedtime. Then I started to cry because I just couldn't believe how far past exhaustion I was. And then Aletha's article popped up like a vision before my eyes, as a reminder of what Ayla needed from me tonight. Just to be there and listen until she had finished.

Aletha says,

Infants are extremely vulnerable, and have a considerable amount of emotional pain resulting from an accumulation of stressful experiences. Distress can be caused by a traumatic birth or difficulties after birth. Babies experience confusion as they attempt to understand the world, and they are easily frightened and overstimulated. In addition, they feel frustrated as they attempt to learn new skills and communicate. All of these result in emotional pain that is stored in the body.

Ayla is a long way from being an infant these days......or is she? Her inability to express her emotions and needs verbally would definitely leave her feeling vulnerable. And the amount of travelling around that we have done in the past 3 weeks has quite possibly left her feeling frightened and overstimulated .....frustrated again. Tonight was a MASSIVE release of pent up emotions lasting one and a half hours. I felt totally helpless as I lay there beside her while she, somewhat, took it out on me before finally falling into an exhausted (if restless) sleep. We can't wait to get home and stay there..... at least for a little while. So, if you don't see us out and about, don't panic, we're just getting ourselves grounded again.

But in the meantime................ it's chocolate for dinner.

MAD AS HELL

2010-03-29T13:42:00.006+10:00

I am part of a forum group called CPecial Parents. It's an internet forum for parents of children with disabilities that fall under the Cerebral Palsy spectrum, where they can go for information, emotional support, or just a good 'ole rant. Last week, the following was posted on the forum and it's important. REALLY important.

Disability Support in Australia is a NATIONAL DISGRACE.

Please read the post and if you agree and you're an Australian citizen, go to the website and take the pledge.

Hi all

http://australiansmadashell.com.au/

A few of us have developed a website to be used as a rallying point in the lead-up to this year's Federal election, for the millions of people directly affected by Australia's dysfunctional disability system.

When you combine people with disabilities of all ages and their family carers - you are talking millions of voters!

Please go to the website

http://australiansmadashell.com.au/

you may recognise some gorgeous kids), tell me what you think of it and take the Mad as Hell Pledge.

The Pledge says that you will only vote for a political party that promises to introduce a national disability insurance scheme (NDIS) and allow people with disabilities and their families to decide how to use the money to support their needs. The NDIS is the first step in funding current needs - like our kids - and planning for future disability needs. It will be a levy of about $8-$10 per week, like Medicare, NOT a new tax.

The postcode you provide in the Pledge will be aligned with Federal and State/Territory electorates, so we can tell politicians exactly how many people in their electorates have Pledged their votes to a party which commits to fix Australia's broken disability system.

Mad as Hell is a group of parents. It is not affiliated with any organisation and receives no funding.

Look forward to hearing your thoughts on the Mad as Hell campaign.

cheers
Fiona

Please feel free to pass this along.

To sleep...or not.

2010-03-26T06:22:00.005+10:00

I can't believe that after 2 years of Ayla practically putting herself to sleep each night, a trip to Grandma's could undo it all. We have had a really good time here at my Mum and Dad's house but 7:00pm each night is not necessarily one of them.

For the first 2 years of Ayla's little life, she woke every 45 minutes ALL night. Getting her to sleep each night required a marathon of breastfeeding and leaning over the cot and patting her for at least 45 minutes to an hour, she would sleep for 45 minutes, and then wake to do it all over again. There were even nights where it was so bad and my breasts were so shrivelled and empty that I would quite literally get Ayla up in the middle of the night and put her in the bath to start her bedtime rhythm all over again. Book reading and all.

Ayla started at a Steiner playgroup from 8 weeks of age and it was there that Mummy received a good education! RHYTHM was EVERYTHING! A daily rhythm, a weekly rhythm...rhythm, rhythm, rhythm. Thanks Jen! So Ayla's 'Bedtime Rhythm' went something like this. Dinner at 5.15pm, in the bath at 6 (along with a few drops of Lavender oil), playing in the bath until Ayla was signalling that she had had enough. We would then hop out of the bath, dry off, get dressed and read a book together (Yes, even at 8 weeks of age), feed and then into bed with some very soft Lullabies by the Melbourne Symphony Orchestra. It didn't work straight away but Ayla gradually got the hang of it.

At around 2 years old Ayla was sleeping through the night and waking only once or twice for a drink of water and we were able to put her into her cot after boobie and books and walk out the door. She would play for a while, sometimes grizzle but would eventually put herself to sleep.

These days, Ayla has almost exactly the same 'Bedtime Rhythm' and she even starts telling me when it is 6:00 and time for her bath. After reading a book or two, Ayla happily gets under the covers and is asleep within minutes.....except on nights that she has clearly scheduled for the Bedroom Olympics at which time there is squealing and giggling until 10.30!

So, here at Grandma's Ayla has decided to regress despite having maintained her 'Bedtime Rhythm' and having put herself to sleep many times before at Grandma's. I wonder what has changed??

Possibly, her level of awareness of her surroundings and her interaction with everything in her environment. This time around she seems to be infinitely aware that this is a strange room, it's dark and she needs to go to sleep in Mummy's bed, with Mummy beside her. Going to sleep here involves a good 45 minutes of wedging her little feet in between my legs, sitting up and casually draping herself across my prone body and pretending to sleep, sighing, pulling my hair, sticking her fingers up my nose etc etc, all in the name of being in contact with me so that I can't leave the room. If I do leave the room before Ayla is 'ready'....hysterical crying. All of this is made MUCH worse if Grandma accidentally gives Ayla the Nut Cookies with Cocoa instead of the ones with Carob powder :).

Anyway, once asleep, Ayla remains that way until morning, even after I move her into her own bed. So, now that I have just written an entire post on Ayla's poor sleeping since being away, I have just realised that it's really not that bad. Going to sleep is presenting challenges, and challenges that I sometimes don't feel equipped for at that time of the afternoon/night but she is still sleeping through the night.

We have been doing some fun things with Grandma and Grandpa like feeding the ducks at the Botannical Gardens, swimming in Grandpa's pool, going for ice-cream, visiting the pitiful zoo but having a great time on the swings. And worth noting...in the photo Ayla is swinging on that swing all by herself with no support! It was really exciting to see her sit so comfortably on the swing, no fear or feeling of being unstable, and just enjoy swinging. Ayla thought it was hilarious when I hopped on the swing beside her and we swung along together.

Off home again on Tuesday for a few days and then back on the plane to Sydney for Ayla's ABR workshop. I can't wait til mid April when things slow down a little....until May anyway.

Ayla and the big Green Cow

2010-03-17T17:05:00.012+10:00

Ok, I have been fighting with post for 4 days now and it's time to bite the bullet....I really wanted to share a video with you from Ayla's session from Wednesday with the Speech Pathologist and the Physio......problem is I can't seem to upload it to the blog. Ugh, technology. So, if you would like to see the video...click HERE Roundabout, I know. But, better than nothing!

At the moment, our focus is on trying to find a way for Ayla to communicate her needs to us. There are days when frustrations are high for all of us because Ayla is unable to tell us what she does and does not want. Simple things like needing something to eat, needing a drink, wanting to use the potty or being just plain BORED.

As I mentioned in an earlier post, our grand plan for Ayla is to have her competantly using an AAC device. A computerised device that allows Ayla to choose symbols or even words to help her construct thoughts, wants, needs etc and have the device output them via electronic voice output. Unfortunately, we apparently can't just jump in boots and all with the AAC. We need to start with "partner assisted communication" which involves cards with coloured pictures and use them in daily life and play to help Ayla become familiar with cause and effect. For example, if you choose the Stop or Finished symbol during play....the game stops. And when she chooses this 'accidentally', the game still stops until she chooses Go or More.

The Speechie has done really well with this and has decided to give Ayla a variety of symbols that all fit into one of two categories with similar meanings and are therefore similarly coloured. For instance, Go, More and Yes are all positives and can almost be used interchangeably. These cards are all YELLOW. Whereas, Stop, Finished and No are all negatives and are all coloured RED.

Anyway, without totally confusing you, this video shows Ayla using the Stop and Go cards in play (Riding a green rubber cow). Although I wasn't able to get a good view of the cards, you can still see that she is choosing the correct cards. Sometimes she uses her hands and other times she very clearly looks at the card she wants.

Enjoy!

Rice Pudding with Buttery Apples

2010-03-17T08:33:00.003+10:00

I thought I would share a little Breakfast recipe before sharing all the fun and frivolity of the Insubordiknit Spinning Workshop.

I made this bowl of deliciousness last week and can't wait to make it again.

Rice Pudding with Buttery Apples

1 cup Short Grain Rice (par cook to make it quicker)
2 cups Milk (I prefer to use organic and straight from the cow)
1 tblsp Rapadura (dehydrated cane juice....or you could use raw sugar or palm sugar)
2 apples, peeled and diced roughly
splash of water
cinnamon
1 heaped dessertspoon butter (please don't use margarine.....don't even touch it with a stick!!)
drizzle of maple syrup (to taste)
crushed pecans

1. Bring milk to the boil SLOWLY. Add rice and turn down the heat so that the milk is gently bubbling. You will need to stir this quite regularly so it doesn't stick. As the rice starts to swell, the mixture will become quite thick. At this point add your Rapadura (or sugar) and stir in. The rice pudding is ready when its really thick and the rice is soft.
2. While the rice is cooking, peel and chop your apples, put them in a saucepan and add a little splash of water and ground cinnamon to taste. Place a lid on the saucepan and bring to the boil, then reduce heat and simmer the apples until soft.
3. Once the apples are soft, take them off the heat and add the butter and maple syrup. Mash the apple mixture roughly to give a rustic feel.
4. To serve, put a big serving spoon full of rice pudding in the bowl, top with buttery apples and crushed pecans. I also like to add a teeny tiny drizzle of fresh cream, yoghurt or milk over the top.

Serves (at least) 2. If you have any leftovers....just re-heat it for Brekky the next day.

YUMMO! I love this Brekky and it keeps me going until lunch time. That being said.....Ayla loathes it! She just doesn't like fruit. But that's ok...more for me :)

And now.....I need to get out of my Jamies and start my day. It's been a very lazy morning indeed.

Come in Spinner!

2010-03-08T18:05:00.004+10:00

Steven often makes comments about me being 'Spinny'. Referring to the fact that I like to spin yarn....I'm sure there's a double meaning there too.

Last night I was plying up some yarns trying to get my bobbins free for this weekend. I have an Art Yarn Workshop on with Insubordiknit from the USA. It's all very exciting for so many different reasons. One, because it's an international workshop. Two, because it's spinning and I love it. And three, because it's for me. Just me. Not something that I enjoy doing but do to raise funds for Ayla. Not something I am doing for someone else or even to further my career (which let's be honest...has kinda gone to the dogs). This is just for me. And I can't wait.

This morning I have come out to make breakfast and found Ayla playing with one of my empty bobbins.....and Steven's comment? Oh no, another Spinny one! Oh please, please how can I make this a reality??? I would LOVE that! That's it, I have a new found drive for Ayla's ABR therapy. I really have to get her hands working.....she wants to spin! Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Change. As good as a Holiday?

2010-03-03T19:16:00.004+10:00

This is the sort of device that we are hoping that Ayla will be able to use some day to help her with communication. Click on the picture and it will take you to another blog where you can see a similar device being used by Schuyler.

Earlier in the year, I was a little peeved to discover that the 'boundaries' had changed in our area. Boundaries meaning the areas in which we can get services from Disability Services. So from the beginning we have been part of Browns Plains....I know don't get me started. The Gold Coast is only 25 minutes away but they 'hot potatoed' us to Browns Plains which is just over an hour away.

In the 3 and a bit years we have been with Disability Services, we have had 3 Speech Pathologists and 2 Occupational Therapists. Each time we get a new one, we start all over again. They all have their own ideas, their own way of doing things and yet they all have one thing in common. In the first few weeks of working with Ayla, they all say, "Gee, she's difficult to assess, isn't she?". I am getting just a little tired of hearing this. Excuse me....People?.....She has a neuro-migrational disorder! Brain kinda does weird stuff and messages go to the wrong place....could we please do some research on the condition before 'assessing' her? No, actually she's not that difficult to assess. You just have to ask her mother some questions, do a little research and it really isn't that difficult.

Anyhow, I digress. So, we have another set of Speech, OT and now Physio because apparently we now fall into the Ipswich area....Yes, Ipswich....don't ask.

We have started again, again. Can you tell I'm happy about that. Well.....I am in some ways. Yes, I received the same ole comment of "Gee, she's hard to assess"....research please!.....but the Speechie and OT are at least Mothers. Thank you Universe!!!!! Mother's! Someone who actually wants to make things easier and more functional rather than telling me all the extra things I need to make time for in my day. The Physio is a bit intense...and young....but I have Mother's!!! Woo Hooo! Now, when I say that I really can't fit just one more thing into the schedule of things that I must do with Ayla, they completely understand and try to make it easier for me.
I guess the only thing that I'm not over the moon about is that we are starting again. Communication is THE most important thing with Ayla and each time we get a new Speechie, it puts us behind. I will say however, that our new Speechie seems to be on to it. So we're crossing our fingers.

Mathilda's Market....the aftermath

2010-02-23T18:35:00.003+10:00

Whoah....I've been a little pre-occupied for the last couple of weeks and I didn't realise that I had neglected you. Sorry....

Pre-occupied is possibly understating it just a little.

The last 3 weeks I have been frantically trying to get everything ready for the Mathilda's Markets...and they have now been and gone. Phew! I'm not sure I was the loveliest person to be around:)....at the sewing machine for several hours per day and night, the washing was totally neglected, and Steven would probably say the same for him.

However, I had a major success with the market with a LOT of help from some very special friends.....I really want to thank Christine, who gave me several hours of company in the last few days before the market with sewing, pinning, overlocking, cutting and just generally being a very calming influence. Angie for helping by cutting out batting for the bibs and a stack of babyshoes, Bec for cutting out more batting and helping out at the Market ALL day and Francesca who was absolutely amazing!!! Fran supplied some gorgeous props for my stall and most importantly the expertise to set it up beautifully and take extra special care with our customers all day long. Cindy for lending me her gorgeously rustic ladder and Mum for crocheting some absolutely fabulous Gnome Homes. And the lovely Jen, who made the most beautiful Steiner Doll and donated it to Ayla's Fundraising. Thank you all sooooo very much. I, absolutely, could not have done this without you all.

At the end of the day I spied both Bec and Fran with their heads together over the calculator giggling away....this was followed by a 'high five' from Fran as she told me what our total sales for the day were....you ready for it?? $950 in sales!!!! Holy Cow!!!! That's $950 straight into Ayla's ABR Account. I had lots of really wonderful comments about my little bits, lots of positive remarks on how beautifully the stall was set-up (Thanks Fran!!) and just generally feel my confidence growing that I'm not the only one who likes my stuff :). Seriously, there are times when I question whether I just like the stuff I make purely because I made it.

On Sunday....I did absolutely NOTHING. I did not move off the couch for the entire day except to visit the toilet. Total Jamie day.

Anyway, I really want to share some photos of the stall with you all. The hardest part is choosing which ones.....

Bunny Shrug Pattern

2010-02-09T21:04:00.002+10:00

Adding to my eclectic mix of blogs here.....

A couple of people have asked about the shrug that Ayla was wearing in this post. I originally saw the idea for it in a Japanese Knitting book but changed it considerably because of course, I most definitely couldn't just stick to the pattern and use what they suggested.....far too normal.

I used my own handspun yarn (pictured above). It is a blend of 90% Blue Faced Leicester and 10% angora bunny...hence the Bunny Shrug, and it is so incredibly soft. If you want to buy some of this fibre for spinning or you would like to buy the already spun yarn.....contact Charly from Ixchelbunny. I struggle to wear anything other than cotton on my skin because I have eczema but I have to say that the addition of the angora rabbit makes an incredible difference. I put my arm inside one of the sleeves for an hour to see how I would react and it didn't itch once!

So the pattern.....
This pattern is a kinda try and grow as you go sorta pattern. Don't let that put you off though because it is such an easy pattern. Basically, you knit the shrug like a scarf (see! you can do a scarf!) and then you stitch up the sleeves like a cylinder but leave the middle bit open....promise to take a photo in the morning.

I used ~4 ply yarn with 5mm needles. I used the larger needles because I wanted a really light shrug for the cool mornings we have on the mountain.

Ayla is a size 4 so I cast on 50 stitches. You need enough stitches that it fits comfortably around the largest part of their arm, so it is quite loose at the wrist. I did 10 rows of seed stitch...so thats:
Row 1, 3, 5, 7, 9: k1, p1
Row 2, 4, 6, 8, 10: p1, k1

And then it's just stocking stitch until the sleeve reaches from the wrist to the centre of the back (between the shoulder blades). Make sure that when you measure it, have your little one's arms stretched out in front. Put these stitches on to a stitch holder or a piece of remnant wool.

Repeat all over again for the second sleeve.

Then thread the stitches on the stitch holder back onto the empty needle and use Kitchener stitch to seamlessly bind them together. And just to help out....here is the best tutorial I have found for the Kitchener Stitch.

Ta Da!!!! You're Finished....Yay You!

Finally....the Fairy Wings

2010-02-08T19:24:00.002+10:00

For the last 3 years I have been longingly looking at all the little girl's tops with the fairy wings on the back and just WISHING that it was worth me buying them for Ayla. But as she spent so much time on her back, I knew that no-one would see her gorgeous little wings. When she finally started sitting, the fairy wing tops were nowhere to be seen.

Ta DA!!!! I found some! Ayla wore her fairy wings for her first day back at 'school'. 'School' being the Special Ed unit where she does Conductive Education. And last week it really was all new for her. The unit moved to another facility....but she still loved it!

If this was good, what would it look like?

2010-02-05T10:07:00.002+10:00

The above image is from eternaltrooper.wordpress.com/2009/06/

I have so much to do today but I thought I would just be a little more self-indulgent.

Yesterday I allowed myself to feel my way through a major disappointment...which I might add may amount to nothing but an emotional reaction to something I wasn't equipped to hear on that day. But, I find that when I allow myself that time to just experience that immediate gut response, I can usually feel my way out the other side of it. And I am.

While in the shower this morning (please don't picture that, it's really not good!)I started to think about an Iridology course I did a couple of years ago where the speaker was talking about re-framing things and she said, "Ask yourself, if this was good, what would it look like?". I didn't really get it at the time but over the years, I have found myself asking, "If this was good, what would it look like?". This morning I asked myself again and this time I actually came up with an answer.

The 'good' side of my disappointment and feelings of anxiety is that I learn that Nothing is Permanent. NOTHING. And that's not just to do with Ayla. Nothing is PERMANENT. Life is dynamic. It flux's and changes, it ebbs and flows. Even though our situation with Ayla is difficult and seemingly different to everyone else's situations....when you break it all down, it's all the same. Nothing is permanent.

Ayla loves her Kindy and for now, that is where she is. It's not permanent but hopefully it won't end sooner than we would like.

The Dementor's Kiss

2010-02-04T16:52:00.005+10:00

This image may seem a little dramatic, and I apologise if it annoys anyone, but this is quite honestly how I am feeling at the moment. It's an image from Harry Potter. A Dementor 'kissing' Harry's cousin Dudley. According to Wikipedia (and yes, I know that's not a totally reliable site but hey, we are talking about a fictional film here), the Dementor's Kiss is the act of having one's soul sucked out by a Dementor. To get a little more dramatic....another character Remus Lupin is quoted in the film as saying,

"You can exist without your soul, you know, as long as your brain and heart are still working. But you'll have no sense of self anymore, no memory, no...anything. There's no chance at all of recovery. You'll just -- exist. As an empty shell. And your soul is gone forever...lost."

Ok, so I know that despite feeling like I am experiencing the Dementor's Kiss, I will recover and at some stage I will feel like I have my soul back. But look a little closer at that quote and there is a really true explanation of how I am feeling right now. No sense of self, my memory has totally crapped itself and I feel as though I am existing as an empty shell.

The last 2 weeks I have actually felt like an almost normal Mum. Ayla is in Kindy. I have a designated 'cleaning' day where I can clean my house without having to attend to anyone else and I can go grocery shopping by myself. Ayla is loving Kindy and apparently thriving on it. She's even having a sleep. Short, but it's still a sleep. I get to Kindy this morning to have somebody dump a great big CRAP on me...here, deal with this!!

A bit of background.....Ayla's enrolment into Fingerprints hinged on her receiving a funding package from a government agency called Inclusion Support. She was assessed and after many weeks and countless revisions of paperwork by the Kindy, she was approved. The funding is a 'subsidy' toward a wage so that the Kindy can have an extra set of hands on to help out or 'include' Ayla in activities. The subsidy is $15.95 per hour. It's not a lot...but it is a subsidy, nonetheless. The Kindy don't want to have to cover the extra $5 per hour it will cost them to employ someone and as I was told this morning, the licensee is very 'stressed' about this and doesn't know what to do. This was told to me, with a kind of questioning look at the end of it as if to say..."What should you do about it?". What do you want me to do???? I get the feeling that I look at this situation very differently to them. The way I see it, Ayla has not been given a 'carer'. The kindy has been given a subsidy toward an extra set of qualified hands to help include Ayla and this doesn't mean that Ayla is supervised or cared for for every minute of every hour that she is there. I have played that role and I know that Ayla needs to be watched but I was able to help out with the other kids whilst Ayla was there. The gap between the subsidy and the actual wage that needs to be paid to that extra set of hands is not my problem. I think the $15.95 per hours more than covers the time spent with Ayla. As far as I am concerned, the 'gap' is the Kindy's responsibility and pays for the time in which the extra set of hands helps out with the other kids.

I realise that if Ayla wasn't there, the Kindy wouldn't require the extra set of hands and therefore wouldn't have the extra expense, BUT, I believe the kindy needs to re-frame the way they are looking at this situation. Whilst I was attending the kindy last year, I was told on numerous occasions that there just wasn't enough time for the teachers to finish all of their paperwork and other chores at the same time as looking after the kids and they frequently had to work back to finish it. Well HELLOOOOOOO! Use this extra set of hands on Thursday and Friday so that you can get this work done! And look at it from this point of view....you get an extra set of hands and an opportunity to get your work done for just $5 per hour! The other $16 per hour has already been paid. If you ask me, the Kindy is getting a bargain.

On a side note....I mentioned this 're-framing' to the Kindy, and they said that it just can't be thought of that way. Can't? or Won't?

Oh and getting back to where I was originally going with this.....I don't need to hear about how the licensee is 'stressed' and what can we do? I have enough of my own 'stress' to deal with on a daily basis....so my advice is this: Don't share the licensee's stress and money worries with me!!!! When she is trying to survive on less than $26 000 per year, fundraising, filling out endless forms for help that never seems to be forthcoming, doing 3-4 hours of therapy per day, fighting a system that doesn't want her kids in it and trying to maintain her sense of self and sanity on a daily basis, THEN I might actually give a damn.

Again, apologies if that seems melodramatic, selfish and rude. But that's where I'm at tonight. It's all I've got. And yes, I am angry and verging very strongly on the wrong side of bitter tonight. But, as we all know, tomorrow will be better day.

Edited to Add:

ok, after having walked away from this for 10 minutes I thought I had better come back and apologise for dumping that on all of you and just calmly say how this is affecting me tonight. So here goes.....

I feel that after the elation of the last 2 weeks that today I just feel disappointed and devastated that just when I thought I could breathe a little and perhaps let down my guard, I have had a reality check that I really don't want. The victim inside me just wants to scream and say, "It's not FAIR and it's not supposed to be this way and why the hell does it have to be so freaking hard?". I feel so broken and anxious that I can't breathe and I have been physically shaking since 9.30 this morning. Thank you for listening, thank you for allowing me this outlet to be real and I promise to share something much more light and positive next time.

The Pendulum

2010-02-01T21:22:00.003+10:00

I've taken this quote from the ABR blog by Leonid Blyum because, although he talks A LOT!, he comes out with phrases that make it seem as though he has experience of having a special needs child himself. He doesn't. He is just super committed to these kids and he cares enough to put himself in our shoes....even if it's just for a moment.

You find yourself on a swinging pendulum – from exaggerated optimism to equally exaggerated concerns and fears. You are easily excited (especially when a child is still young) but you are easily scared as well. That’s a heavy emotional tax that zaps one’s energy really fast; and as the years go – excitement vanishes or translates into a pure chase of “last hope” while the scares become more and more real, especially with under consistent ‘hawkish’ pressure.

That’s the cost of ‘blurring’. It’s a universal trait of a human nature that we are most stressed and demoralized by some vague gloomy threat, where the vagueness itself makes it seemingly omnipresent and incapacitating as a result.

Teetering on a precipice

2010-01-29T19:13:00.005+10:00

If you have been following the blog for a while you may recall a blog post about genetic testing and our (read 'my') need to have more children in our life. If you would like to catch up or re-read about the sagas of genetic testing and then actually getting the results back you can read here and here.

We did finally have our appointment in December but it has taken me this long to bury my head in the sand, come out long enough to mention to Mum that we had had it, put my head back in the sand, mull it over for a while, probe my husband for his thoughts, mull some more and then finally have an adult conversation with Steven about it......and now I'm here....sharing it with strangers. Why? Because this is the place where I can be real. And posting stuff here is sometimes very cathartic....Sometimes.

After a huge build up of cancelled appointments and missing results we are no better off. There. It's said....now I can go eat chocolate. Oh, you want more than that? Okay then.

We saw an independent Geneticist who said that they were able to find nothing out of the ordinary in Ayla's testing. Sounds good, doesn't it? It's not. The key words here are "able to find". The testing is only so good and if they were able to look further it's likely that they would find something. But they're not able to at this point and who knows how long until they can. The Geneticist did, however, say that he felt our chances of recurrence were more likely in the vicinity of 1 in 10 rather than 1 in 4. It's not really much better if you ask me. He said that Bilateral Frontal Polymicrogyria is rare.....and then I very gently reminded him that rare things happen....clearly. Around the same time as this appointment we were also reminded that lightning does in fact, strike twice. A friend of ours who has a little boy with a disability due to premature birth went into premature labour again. Even earlier than with her son and this new baby, a little girl, has had a major brain bleed. Apparently, the news for the future is looking very challenging. Yes, this is a very different situation to ours. But when in 'our situation', it's rather confronting.

So where does that leave us? Right back at our original spot of having to choose not to have another. There are options....lots of different options. It's funny (not ha ha funny) that none of these options come without the possibility of some pretty heavy emotional tolls on one or both of us....and possibly others if we gain enough courage to ask. Just stuff we need to work through I guess.

One of the options is ringing loudly in my head and that option is one of donor gamete/s. In other words donor egg and/or donor sperm. So f*%$ing clinical. It's not meant to be this way. Babies are supposed to made in the moment that 2 individuals share absolute and unconditional love, not in a test tube!! But it may be the only way. We're kinda leaning toward donor egg. It's my feeling that men really struggle to bond with babies in utero and even in the first few months whereas women tend to begin their bonding from the moment they realise they are pregnant. I'd like to think that using Steven's sperm would make the bonding easier on him.

Then again, donor eggs aren't just available like sperm is. It's such a process that a woman has to go through to have her eggs 'harvested' - nice huh? Apparently, the wait can be 2 or more years unless we have a willing donor. To be honest, I think I would prefer to know my donor rather than go anonymous but then you are led into a whole other realm of emotional STUFF. How do you ask someone....Hey! Can you go through months of hormone treatment, possibly put on weight and go through some serious mood swings and then at the end of all that, let a specialist likely to have the bedside manner of gnat, harvest your eggs to give to me? It's not the easiest question. And I am more than a little aware that, although 'the chosen one' may be absolutely willing, there is still some pretty heavy STUFF that she will need to work through.

So, that's where we are at. Teetering on a precipice. Hoping that the decisions we make aren't selfish, messy or thoughtless to one another, to Ayla or to anyone else.

Toilet Training Record

2010-01-26T18:33:00.004+10:00

Yay!!! We broke a record today! Three Wee's and Two Poo's in the potty...Woo hoo!

It's all in the timing at the moment but I am guessing that's what it is all about when you first start...and if it's not, then don't tell me! Don't burst my bubble. I would much rather remain totally ignorant :)

I must say though, that both Steven and I have witnessed Ayla determinedly rolling toward the potty, placed her on it and she has done a wee....so maybe she is trying to tell us sometimes. There have also been plenty of times that she has rolled to the potty and there has been no wee.....Alright! I'm imagining it....sigh

Houston - We a have Kindy Girl

2010-01-23T06:54:00.004+10:00

Okay...Everyone take a deep breath in.....hold it.....and give a big sigh of relief out....Aaaaaahhhhhhhhh. Houston, we have a Kindy Girl!

I am so relieved right now. In the lead up to this week I have been wondering what little unpleasant surprises would be awaiting me on Ayla's first day at Kindy. You know, things like "Would they change their mind about her enrolment?", "Would inclusion support add just one more requirement that sent the kindy over the edge...never to enrol Ayla again?", "Would Ayla get so upset and not sleep and completely disrupt ALL of the other kids and the kindy tell me she wasn't ready?". I even rang Fingerprints the day before just to check that Ayla was "All good to go tomorrow".

Nothing.....no changes to her enrolment, no more requirements from Inclusion Support, no tears....just a little disruption at sleep time on Day 1.

But Day 2 was even better! Ayla actually went to sleep! It was only 30 minutes but she went to sleep. No tears, no frustration. She just quietly played for 10 minutes and then went to sleep. The kindy called my phone at 1.45pm, which sent the butterflies madly spiralling around inside me...just for a moment, but only to tell me they were so excited because Ayla was asleep and to TAKE MY TIME getting back there....Really? Cool!

Aaaahhhhh. This really could be a fantastic year afterall.

It also appears that Ayla is really loving Kindy, despite us not being with her. The teachers said that she had a great time. At home, there were big smiles at the mention of Kindy and on Day 2, Ayla squealed and giggled all the way there.

On a side note....I had a really good day too. I did the grocery shopping all by myself and actually finished it in one go. Kinda like a mother who has a 4 year old that goes to Kindy...Life is Good.

Excited and Terrified...

2010-01-17T19:07:00.005+10:00

Excitement (and exhaustion) abound in our house today. We held our Bunnings Fundraising BBQ yesterday at Nerang. The day was fantastic, raising just under $1000 for Ayla's ABR But that's not all that has created excitement in our house. We're excited and humbled and blessed and extremely thankful for the wonderful show of support that we had for the BBQ. Friends, family and the amazing team at Wealthfarm Financial Planning all descended on Bunnings yesterday, helping out on the Barbie or just rocking up to buy a sausage. We had good friends from our Mountain home come down early to get the day started. Thanks so much Mark and Mick. Mum and Dad came down from Bundaberg to help out. At one point we had 6 members of the Wealthfarm team manning our stall at one time. I found myself standing back lost for words at their show of support and feeling more than a little emotional at how blessed we were to have them.

Bec, Nicole and my Aunt and her friend came on for the afternoon shift and clean-up and our friend Heather arrived in the afternoon to help too only to find that there were plenty of hands to help finish the afternoon off. Thanks Heather for offering your help....sorry we sent you home :)

And still, the excitement doesn't end there...but this is also where the terror comes in. On Thursday, I received an email to advise me that I had finally been successful in my application to have a stall at Mathilda's Market!!!!! What's that? Only one of the most exclusive Baby and Kids Designer Markets in the COUNTRY!!!! And my little fundraising venture, Don't Tell Mamma, will be there trying to keep up and mix it with the big fish...enter little nervous giggle. I'm very excited and VERY TERRIFIED!!! I have next to no stock after Christmas and only 1 month to produce oodles of stock that hopefully will meet and exceed expectations. Wish me luck and don't be surprised if I appear to be missing over the next 4 weeks.....