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,..."