A - Freakin' - Men!

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...

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

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

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

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

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

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'

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

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

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

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

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

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

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.....

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

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

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?

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

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

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

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

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

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

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!