Friday, December 05, 2014

Round up from the Dock

Well, well.... I have been in 'special ed' for a year now.... and I love it. It's not easy. The view from the back of the room is often quite tainted. I wish inclusiveness came more naturally to some staff and teenage boys. But the days that are good - wow. It's good. The people I work with  - they're great. All the changes in the disability dialogue - what happens in the wider society - is happening in schools. In just 15 years we are making such progress. We still fail quite abysmally too though.

Hannah's primary school fail too, sometimes. But boy oh boy - they keep at it - and they get it so much more regularly than they don't. They are a wonderful pinup poster for inclusion. It pervades the community.

Just today was another small example, a small example that reveals so much. It was the day of the school swimming carnival. My MIL was at the carnival for a couple of hours (she and my FIL often go). Both Phil and I got calls from her - did we think Hannah could swim in a 50 metre race? Well I didn't know - but I figured it was worth a shot so long as she had a noodle or kickboard and was in the lane near the edge - I figured she be ok. In the end sheswam it with a kickboard and a student from Year 5 in the pool with her. A friend texted me this afternoon to tell me about it. My MIL rang both of us to tell us about it.... Her teachers were at the side of the pool encouraging her to make it to hte end. When she got out and went to the stand for her ribbon (a first!) one of the teachers who had the microphone asked everyone to give 3 cheers for Hannah - my friend tells me they all raored their cheers. Ah, my eyes are misty just thinking of it. That is inclusion. At the same carnival Hannah's brother who is not necessarily a great swimmer went in 5 different races. He had a go. He got some place ribbons too - I've strung them up across our fridge with magnets - a banner of pride. I am so proud of my children and so blessed by the community we belong to.

I want to translate that experience to the HS that I work at. It's worth it. Wish me luck....

In other news:
Hannah still loves swimming - and is working on her 'big bubbles'
 Building Hannah's birthday gift together
 The boys went camping - looks like a beautiful spot.

 The husband's birthday had a recycled vinyl theme - appropriate given that he has obsessively been playing all our vinyl records from Z-A for the past 6 months or so - and logging each album played on fb and twitter. We are somewhere around 240 at the moment - maybe half way there.
 Hannah has been having fortnightly Occupational Therapy and daily obsession with Scooby Doo - this is her most recent drawing of her as Shaggy and me as Scooby.
 Kit and I went to see the Nutcracker ballet at the Opera House
 We had a wonderful weekend away with friends and the girls prepared a dance item for us
 One of Hannah's readers involved Teasing Mum - where a hose was turned on the hapless Motherby her dreadful child as a joke. Hannah loved the idea so much she mad her won version (and actually followed through on it too) - Teasing Dad. So while she and her father were washing the car ... yep. Lucky he's a good sport and a total sucker for his children.
 Tangled has also had a bit of an airing on the tv - and the lego set has been constructed and the scarf Hannah knit has become a staple in the dressing up like Rapunzel game.
 More swimming - and getting better at it all the time.
 The joy of a pre Christmas spring clean. Their room is looking so much better and we bought a desk for Kit which has turned out to be a very good idea.
 There have also been a number of parties to go to...
 Including Kit's minecraft with 'water' (jelly) shots
 and Hannah's sushi and kokeshi doll do.
 Kit has finally made it into squads and is very happy.
 Some composing, just because she can. She is recording herself on the ipod in this pic.
 Formal piano lessons have come to an end... that's a separate post but suffice to say that she has enjoyed the opportunity immensely.

Concert season began with a Dancing Heart soiree - it's her dance class for children and adults with disailities. It was a blast of a concert.


 And then her mainstream dance class had their concert. She LOVES that one - especially her Musical Theatre teacher. She danced to Little Shop of Horrors.
 Finally, Tis the season....
 my favourite season...
Happy Advent indeed.

Sunday, November 30, 2014

Advent

The countdown to Christmas has begun. I love this time of year. Work is on the downhill run and so is the treadmill of the kids activities. Hannah has finished her regular dance concert and the one for people with disabilities. She was fab and we all enjoyed cheering her on. She's also been enjoying her swimming - she is swimming every day at school at the moment and while packing fresh swimmers and towel each day is a pain - she loves it.


10 proved to be a bit of a milestone birthday. Double digits and growing independence suits my monsters. Kit had a mnecraft party and Hannah a sushi party. Both were lovely.

Kit is still dancing. His ballet concert is coming up soon. Last night he and I went to see The Nutcracker Ballet at the Opera House - a wonderful night - to quote Kit - "it was awesome!"


Wednesday, August 06, 2014

Democracy, adults and children.

Years ago a colleague and I who taught Legal Studies had a cartoon we both liked. We'd use it to generate discussion in our classes. Essentially it was about democracy - and how great it was - and the drawback that every person gets to vote - whether you agree with them or not. The punchline was along the lines of  'beware the morons bark'. In times when every troll and fool gets to have a say on social media it still has resonance.

Last Friday driving home from work, I heard about Gammy for the first time. Since then he has been getting lots of  social media time. Reports of the matter are a bit blurry - so this is my summary of what I understand to be reasonably accurate about the matter. An Australian couple paid a surrogate Thai woman through an agency to carry 2 embryos for them. At some stage during the pregnancy it was realised by ??? that one of the twins had Down Syndrome. The Thai woman was asked to have a selective termination, anywhere between the 4-7 months stage according to what I've read, but she refused. Two babies were born. A 'typical' girl and a boy with Down Syndrome who also had a congenital heart defect. The commissioning parents took the girl baby home with them. Gammy, the boy, is being raised by the surrogate who does not have the $$ to ensure that he gets the major heart surgery and after care he requires. She claims to have entered into the agreement to help pay of her family's debts and says that she has not received all the $ agreed in the surrogacy arrangement. She is raising Gammy. Without surgery Gammy will die. The biological 'donors' technically seem to have abandoned him in Thailand.

As I listened to Richard Glover retell the tale on abc radio 702 Drive program, I cried. There are things happening in the world that disturb me greatly. The children killed in the Gaza conflict. The children seeking refuge in Australia. These are 'big picture' happenings where I can see how children's lives are disrupted, disturbed and sometimes destroyed by the conflict between adults. Gammy provides a peephole on to some of the same issues as they play out in the life of just a few individuals. His story resonates with me for many reasons. Firstly, like his biological parents, I am Australian. I have twins via ivf. One of my twins is male, the other female. One of my twins has Down Syndrome, the other is 'typical'. My twin with Down Syndrome was born with a congenital heart defect that required major heart surgery when she was just two months old. There the resemblence ends. I never dreamed of separating my twins.

Gammy's story may have turned out so differently with just a few different twists and turns in the course of events. If a surrogate hadn't been required, his biological mother could have sought a selective termination here.  The biological donors could have accepted both babies from the surrogate. The surrogate may have gone ahead with the selective termination... and no story may have eventuated. You see, not only is the role of power, privilege, human trafficking, parenting and the dignity of the child significant in this case, so is chance. I believe that just like democracy, people need to be able to make choices. Those choices are not necessarily ones I agree with but we each need to be able to come to our own conclusions, and in collaboration where the decision affects other adults, as it often does in complex situations.

If there is a dispute between conflicting adults the family court applies the principle that the interests of the child are paramount. I wish that was the case in the wider world. Gammy's story makes me sad. It also gives me hope. I was touched by the compassion with which Richard Glover related the news the first time I heard it. He commented that it was one of the saddest stories he'd heard. There is a rapidly growing 'help fund' for Gammy's care. Discussions are occurring in many different places. Democracy only works if people are informed, if a range of views get listened to, if everyone has a say.

I have been part of the growing movement of people with disabilities, carers, families and friends who have been raising awareness about issues of fairness and justice for people with disabilities in our society. As the media attention fades away on this and hopefully Gammy gets his surgery and settles down with his loving family... what have I learned from this story? Advocacy never ends. We need to stand strong for the dignity of children, for the value of adults whose lives are too often undervalued in society. The ultimate goal is self advocacy. I want to raise a daughter who can speak for herself. And I want a world that will value and listen to her.

We have seen some significant reforms in Australia through the piloting of the National Disability Insurance Scheme (NDIS). My daughter attends mainstream primary school where she is resepcted and liked by her peers and teachers, where the other families of the school inlcude her in the community. I work in special education in a mainstream high school - and I can see real changes continuing to happen - to make life fairer and better for all. I have crucial networks with other advocates each with their own way of fighting the good fight. The Mum whose handsome boy is featured in fashion ads, another who focuses on ways to help women who receive a prenatal diagnosis have up to date and 'real' information when making life altering decisions, the countless public fb pages raising awareness of people with Down Syndrome, the love and support and understading we show each other when things get tough, as they do sometimes on this journey.

When I walk down the busy city streets, laughing and chatting with Hannah, my precious daughter who has Down Syndrome, I am showing you a peephole into our world and I hope that that glimpse will allay the fears and misconceptions that are held about difference and disability in particular.  She is part of the happiest story that I have ever experienced. So like the tattered beast that is democracy, we are not always going to agree. My shoes are not yours but That doesn't mean we can't learn from each other.  Almost 10 years into this journey I have found a steel core of openess and support in the people I meet and in some noteworthy institutions too. I can see a future where the dignity and rights of children will be seen universally as being of paramount importance, if we continue to work for it. That knowledge and the article I read recently about Gen Z.... these kids, yours and mine, growing up now with all their privileges and access to information, are going to be awesome! And so the story of Gammy is not 'happy' or 'sad' but a bit of both and all the bits inbetween too....

Here are some gratuitous 'twin shots' because the hardest part of the whole story for me, the reason I cried when I first heard it, was the apparent disregard for the bond of the twins themselves. Twins are magical however they are conceived. They have grown together from the very beginning and it is not the place of adults to experiment with or destroy it.








Tuesday, August 05, 2014

August begins

Well hello!
It has been a very busy 6 months in the Dock. Kids are both doing well. In different classes this year - both working and learning. I am settling into the new job - I have almost been there for a year. I am also studying again - this time it is a Certificate in Gifted Education.

Winter has been mild. The vege patch has been restocked. Here are some random pics:
Both kids are still swimming....


And dancing....



And learning piano


And just goofing off as twins and siblings do

Monday, February 24, 2014

2014 - another new year brings....

Well, well, well....Hello and welcome back. If video killed the movie star, facebook killed this blog. Or did it? Today I had a message asking for a link to it. I had to reply that I had closed it about a year ago. The shams has been a great source of therapy and fun and creativity and sharing for years. Facebook is not the same. The focus on the minutae is greater. I don't get to grand stand and rant as much. Hey at least it isn't twitter! Still some things in this world require time and thoughtfulness. They can't be condensed so easily for a 50 - 100 word post. I am not that skilled a wordsmith!

And so not quite a year since my last post - I am back. If you happen to chance upon this blog I hope that you enter into my world with good faith and a generous spirit. Feel free to comment or say hi. Especially if you are on the 'outside' of the disability community  - I welcome you and hope that you embrace the opportunity to see another side, another view. If you are one of our community - then welcome! My journey is not yours, but when we share our experiences, our perspectives, we add to a ripple effect that I hope spreads an important story of acceptance and richness that is often overlooked or misunderstood. Please - leave a comment, say Hi. It's in our presence that we are strong. Sometimes being a witness is all we can do. To acknowledge reality as it is for another person. It may not be our reality but it doesn't mean it isn't real. So please - any comments - be kind! I don't mean to offend anyone and some things I have written I don't even necessarily agree with months or years later... but I did feel them at the time and I am honouring those emotions by leaving them up and (relatively) unedited.

This new era f blogging brings other dilemma's for me. Not only are my children older and more aware of their own right to privacy but an important change in my career - one that I'd like to explore on this blog is that of a special education teacher. I will have to play with what I can share on that. I'd love to reflect upon this change in the Shams but obviously there are many ethical aspects that I will also have to balance. We will see how it goes.

For now - an Update.
Twins - just started Year 4. Progress - very good! I am very pleased with both brats. Can't believe how much they have grown.
Work - I am a Special Education Teacher!!!!!!!!!!!!! Wow, that feels weird. I still have to get my head around it. For 20+ years I have been a HSIE (Social Science) teacher. Now I am learning to shift my professional identity in a slightly different direction. I sit in other people's classes - watching carefully to monitor how 'our' kids are going and constantly thinking about how I might help them more. I love it! But after being the show pony of hte classroom for years - it makes it hard to melt into the background - I am learning though. ANd just in case there's any doubt - the kids - they are awesome of course!! Big ugly teenagers. Hormonal, moody, atypical and delightful. Puzzles of people that I am privileged to get a glimpse of, to have the opportunity to get to know, just a little bit more.
Home - still living in the Dock and, drum roll please, about to put in tac claims for the last xx years! This is a milestone cos we have promised ourselves that once we did this we could start to look at architects and ideas for adding on a couple of rooms to our home in the Dock. How exciting is that??? A boys bathroom might no longer be just a dream - and maybe one day I'll have hot water in the kitchen :-)

Photo from above was taken this weekend. We took the kids down to the Shack - with 3 other families. It was a blast. The kids have all grown and are doing so well in their different ways. It was great to see everyone. I was particularly proud of my Kit. He just excelled. He is very sociable - and used those skills to involve the other kids in different games/activities. He got on with everyone and provided a great role model for the two younger kids who were also 'typical siblings' like him. He gave acceptance and understanding and friendship to all  - and I know he gained so much from it - not least the opportunity of deepening friendship with 6 other kids (including his own sister). It was a priceless experience for him. He is a natural leader. I must say that I also think he was the one who looked like he had the best time too!



And as for my precious girl, well she continues to delight. She had a blast but she also enjoyed getting home, to her own environment.