A perspective on the world of disability from a mother and an educator. Follow my blog!

Friday, 21 February 2014

It's not rocket science, but it IS science.

There are some amazing people in the world who go out of their way to adopt or educate children with disabilities. Most of us however, never make that initial choice.

'Hey, wouldn't it be great if my life had more difficulty, more stress, more anxiety, more grief, more hardship? I'd love for my child to have to work harder than everyone else to achieve the same, even though it will most likely be less.'  SAID NO PARENT EVER!

In the same vein, my big girl doesn't wake up in the morning and say, 'You know what, I'm going to try really hard today to annoy my sisters, irritate my teachers, and upset my parents.' I doubt any child wakes up and thinks that to themselves. So much of a child's behaviour is a reaction to context and environment. However, part of the reaction is determined by science.

For some, the influence of science is a greater obstacle than others. T21 means an extra piece of information in EVERY SINGLE CELL of her body. Hands up if you think that might impact on her decision making process? What is easier to change, the actions of the adults around her who are compos mentis or the actions of a child who doesn't fully understand the world around her? Behaviour IS communication and communication IS behaviour.

I can't recall the number of times I have seen teachers try and discipline the 'naughty child' when it was clear as day the child was having difficulty with sensory processing. It's not a choice the child makes, it's the way their brain is wired to interpret the world. IT'S SCIENCE. A friend of mine once told me of doing a day of relief work and being warned of the 'naughty' children in the class - how horrible and rude they were, they couldn't even sit still. She walked into the class to start the day, turned off the fluro lights and the ceiling fans and had a perfectly pleasant day with the children. (PS - You know who you are, you still inspire me!)

Working in early childhood now I am living the dream. Ever since my big girl started early intervention at 2 weeks old I have wanted to do this job. Every child deserves the best possible start to life and I'm so blessed to have the chance to impact not only on the lives of the children, but the families as well. We held an amazing workshop for the children and adults this week that was all about pre-literacy and numeracy - based on neuroscience. How fantastic was it to hear parents talking the day after about how they could positively influence their child's development!

I liken those who so quickly blame the child to those who subscribe to the flat earth theory; those fundamentalists who choose to believe something despite all evidence to the contrary. If you're reading this then you know who I'm referring to. Teaching qualifications in Australia require you to have studied at least some basic educational psychology. Study some more (or say, I don't know, pick up a book or watch tv) and you'll be able to learn even the simple basics of developmental neuroscience. Now apply that knowledge to the children in your care. Stop living in the dark ages of disability.

There are plenty of metaphors to explain how a brain works.

Executive functioning = a steam train changing direction
Memory = a filing cabinet that's not in alphabetical order
Cognition = a spider's web with the threads broken

When you can get your head around what the FACTS are, then you can start changing the variables to get the outcomes you want. If a simple humanities focused mum/teacher like me can understand, then it can't be that hard.

Friday, 14 February 2014


What a brilliant day to be blogging! Valentine's Day! Spoiled my Bear and he spoiled me. Despite having school meetings to go to tonight we will still be having a special V Day dinner and this year we are including our girls. We're telling them the story of St Valentine and sharing the love. It's part of our 'together' theme for the year. We are better parents for looking after ourselves and better in our selves for looking after our girls.

I love OTT displays of affection and really went all out this year with gifts and paper craft and cooking. I go OTT with my girls too, showering them with smoochy kisses and tickly cuddles. There are times though, when they need quiet love. One on one time where we have time to just 'be' together. This idea of balance has really had me thinking this week. Just like Alice nibbling at the two pieces of mushroom it can be hard to figure out how much you need of each to feel you are 'the right size'.

I've been blessed with a fabulous new job this year that has me doing several balancing acts. I'm balancing management duties with classroom teaching. Learning the ropes of being a director means I'm delegating the teaching a bit, but I know in a few weeks it will balance itself out. I have the most gorgeous kids and I have so many exciting things planned for this year. Balancing my roles at work aren't the only things on my set of scales; now that I'm back working part time I feel I'm in a much better position to balance work life and family. I'm adoring my days as a stay at home mum with my littlest girl, my Viking. We spend our days just chilling and baking and walking into our little town to catch up with friends.

Work balanced with family = happy life.

Our veggie patch is starting to pay dividends and the produce is spectacular. Our girls are getting a great sense of ownership seeing as they came up with the idea, they helped build it, choose the veggies, watered and weeded and now they get to eat the food the have harvested. They are asking us if they can exercise along side us when we run and when I do my yoga. We balance this with plenty of treats, our weekly pizza and movie night, chocolate Frogs from Grandpa and lots of baking sweets.  
Healthy lifestyle balanced with indulging in treats = happy body & mind

As for my disability advocacy, it's a fine line between working hard for my big girl and putting all my effort on her and spending energy helping others to fight for their children. My big girl has an IEP meeting coming up soon so my Bear and I are thinking about what she needs to get from the next 6 months of school. On the community front, I'm helping one parent deal with a SE teacher who doesn't seem to understand the funding system or have any useful strategies and helping another who is battling depression. Balancing the help I give my big girl and the help I give to other parents is tricky. I refuse to sit back and watch others go through the pain we've gone through in the past but I will not give my girls anything less than 110%.

Helping one balanced with helping many = happy soul

My little Unless Facebook group is underway and I invite you to join us. We're busy sharing funding opportunities and offering support and advice to those who need to share their experiences. Come and tell us what you are busy balancing!

Happy Valentine's Day! Much love to you all!

PS: Look what was just delivered to my front door! He always remembers the colours of my wedding bouquet! Love my Bear!

Sunday, 9 February 2014

The battle against ignorance continues.

We don't watch commercial tv in our house. We're too cynical for all the cheesy reality tv and we indulge ourselves in plenty of HBO and Apple tv for recreational watching. My personal pleasure is to watch the documentaries available on ABC iView.  There have been some amazing insights into the world of disability and diagnosis in the past week and I have enjoyed sharing these with my girls.

The first was the story of Jono Lancaster who has Treacher Collins syndrome in the aptly titles 'Love me, love my face'. My middle girl asked 'Why does he look funny?'.  I was so glad she asked and it opened the door to talking about how people my look differently, act differently or talk differently but that doesn't stop them being amazing people and we need to treat them with kindness and respect no matter what.

The second documentary was about Hayley, a girl starting high school who had a diagnosis of progeria. Again I had to explain to my girls why she looked different to them and correct them on asking 'Why does she look funny?'.  I also explained to them that the story was about Hayley trying a new medication that would increase her life expectancy.

On both occasions I took the opportunity to teach my girls
1) the most respectful way to ask questions - language choice IS important
2) that tolerance of difference is the best way to treat others
3) that it is ok to ask questions
4) that once you have the answers to your questions you need to change the way you think and act

We all take up the standard for our own personal cause whether it is cancer, Down syndrome, ASD, diabetes - whatever. We learn so much about what affects our lives and hopefully that makes us more empathetic to the journeys of others in similar boats. However, not everyone takes up a standard that will expose them to what it is like to live a marginalised life. Ignorance is inevitable.

Just this week my husband was introduced as 'the father of 3 girls, the oldest has DS'.  I am exasperated by the level of ignorance illustrated by the person doing the introduction. The DS DOES NOT define our daughter, nor does it define who we are as a family and it sure as hell has no business being the first thing you tell a stranger about us or our family.

Why is it that I can so easily share our journey through disability with the public via this blog, I can start support groups for families like us, I can reach out and actively help those who are going through the initial stages of discovery, but I can't walk up to this person and dispel their ignorance? I fear that I will not evoke empathy in them, but simply reinforce the 'crazy special needs mum' label applied to so many in our situation because I'm sure that is the reality this person has experienced in the past.

I must believe that I can make a difference. That I can change enough people's understanding that those who are ignorant are the ones in the minority.