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.....