Thursday, September 30, 2010


Hold on to your hats....or make a'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 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 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 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 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.


Written by Missy's proud mum said...

If you don't me saying, never underestimate a kids ability to use a communication device. Every parent I talk to about communication, I encourage to put that communication device in front of their child as early as possible.
We were never expected to learn to drive a car without practice and a car.
jenny, missy's mum

Melissa Luxmoore said...

Thanks Jen! I agree 100%...the powers that be have been stalling for 2 years. I've just purchased proloquo2go for my iphone but the ipad will have to wait a little while. I've decided that if the speechies think she's not ready....I'll just do it myself!

Robync said...

Wouldn't it be nice if life could give us a break once in a while. This beautiful child needs a real person to listen to her mothers requests, they say no one knows a child better than the mother, yet decision makers treat them with contempt for daring to have a say. Carer's, be it teachers or what ever, become complancient because at the end of the day they go home to normality, so why care enough to make a difference for families that struggle ever single day. I am truely mad that no one wants to listen to simple but smart requests. Any early intervention will save so much money in the future and give Ayla an opportunity to reach her full potential. Come on people forget your egos, and start earning your money and making a difference.

Gina said...

Hey Melissa - my advice is don't get too caught up in the idea that feeding, dressing and toileting oneself is sooo important. Sometimes it is physically impossible and people waste many years focussing on something that may or not ever eventuate. In that time so many vital social and academic opportunities are lost. We sent Mac to school 5 days a week full time with absolutely no true knowledge of his cognitive capabilities - for us we felt it better to be in a learning environment with all the insights his same aged peers could bring to his life than being isolated by homeschooling or segregated in special ed. We don't do any physical therapy at school - that's not what he is there for. He is there to be immersed in learning - if she isn't used to long days then I would recommend you consider part time days but every day (ie 5 days per week) for Ayla. Send her off to school for the morning and collect her for the afternoon when you could do your ABR. She should be able to do this no probs in Kindergarten and then you can negotiate from there on in.