Tuesday, July 31, 2012


Sometimes I meet people or read something that offers a view or an opinion that feels like someone has shone a light up in my attic of a brain and formerly bleak areas are that little bit lighter as a result of the interaction. I love those moments.

There are friends that I have met who have enriched my worldview by sharing theirs with me. Others I find I don't particularly agree with but I still enjoy listening to and thinking about their perspective. I respect their opinions.

This week I was browsing special ed journals and I found a gem of just such an article. It is "Accessibility to NAPLAN Assessments for Students With Disabilities: A 'Fair Go' by Michael Davies of Griffith University. It is a current one being published this year.

Reading through it makes me consider more carefully a decision we made rather blithely last year. Our school principal asked if we wanted Hannah's report to use the same grading as her peers. Now Hannah has an IEP and so long as her report is based on that I am happy. Who needs to see a row of Es to know their child has an intellectual disability - nevermind how she would feel should it ever occur to her to look at those grades and understand what they indicated.

So I promptly said 'no thanks' to that standard report happy to have been consulted. I did not have a second thought about it until I found Davies' article.  In fact the gist of the article is that it is inequitable that students with disabilities are most likely to be excluded from participating in the national assessments (Naplan) that take place in years 3, 5, 7 and 9. Naplan assesses performance in reading, writing, language conventions (spelling, grammar and punctuation) and numeracy. According to Davies approx 5% of the student population, that is about 50 000 students do not sit for the exam. What does this figure tell us about inclusive education.

Naplan is still in its early days and not without it's contraversies. What is it's purpose? To name and shame schools? To make schools accountable? To place pressure on parents who might be tempted to 'coach' their children? I am pretty sure that I'll be one of the parents that buys the preparing for your naplan book from the post office and spend time prepping Kit for it next year. Is it to dominate the focus of the classroom at the expense of broader curriculum? And if so is that necessarily an unacceptable phenomena? According to Davies it should be able to provide reliable national data on the learning outcomes of our kids so that initiatives and funding can be used more effectively to respond to areas of demonstrated weakness.

My experience of the process is limited because my children are still in year 2. I have heard parents discussing our school results in naplans past and comparing them to similar schools. The analysed datails available on the My School website. I know the school itself spends time analysing the results to inform best practice and no doubt to damage control the marketing too...

The purpose of the article was to raise awareness of the number of students with disabilities or additional needs who do not sit the national assessments - and to promote change in practices so that 'all students with a disability are included'. Why? I asked myself. Why? Davies states the plan for good quality data being available to improve student outcomes. If that is the focus then indeed why ignore students with special education needs?

Well - Davies says that we have approx 3.5% of students having a disability. Increasingly these students are attending inclusive education environments or 'regular schools'. At the same time we have legislation to protect students with a disability from discrimination in education. The focus is on 'reasonable adjustments' - and the standard that these adjustments should be made if possible to enable the student with the disability to participate. Schools are also required to provide a minimum of support for the student with the disability. Indeed there have been a number of cases taken to HREOC (Australian Human Rights Commission) regarding adequacy of adjustments made.

There are 2 categories for those students who don't sit for the test - exempt and withdrawn. The standard naplan policy is that students may qualify for exemption from one or more of these tests because of 'significant intellectual and/or functional disability' However the preference is for students with disabilities to sit for the examination if their parent/carer prefers.  Principals are required to consult with parents in matters of expemption. Exempt students are judged to have achieved at a level 'below national minimum standard' and are reported in this group alongside peers who did sit for the examination.

NSW states that students with disabilities or difficulties in learning are expected to participate in testing. However parents have the right to withdraw their children form testing. This is a different category and these students are not reported in that they are grouped with students who were absent or suspended.

The characteristics of the students who are exempt or withdrawn is not collected. What the data does show is that of the approx 5% who do not sit the tests in Years 3 and 5 - approx 1.5 - 2% are 'exempted' whereas approx 3 - 3.5% are 'withdrawn'. The numbers not assessed increases in Years 7 and 9 - the number of expemptions is between 1 - 1.5% and the withdrawals 2.6-6%. (Davies p68) The significance of this is that the withdrawals are not included in the data that is crunched onto the My School website. Schools who wish to minimise the 'perceived negative impact of students with disabilities on the percentage of their students achieving national minimum standards' might be encouraged to 'withdraw' the child from testing altogether. (Davies p68)

This situation threatens the education of 'poor performing' students. The article sites examples of school principals etc being offered financial incentives for improving their school's performance profile in these tests. For individual teachers greater emphasis is given to training students for these tests than the broader curriculum - surely this means the students who are exempt or withdrawn are vulnerable to being sidelined in the learning environment.

So why should parents of children with a disability care? The danger highlighted is that the accountability for our students is compromised by this shortfall in the assessment tool. The idea of being outsiders in a mainstream world is reinforced by such marginality. There is no national benchmark, no longitudunal data to track progress, to plan and address for improved learning outcomes. The whole purpose of assessments - for learning, as learning and of learning is undermined. Students with disabilities become less important to the school curriculum. Their academic achievement a reduced priority. Food for thought. I am still mulling it over. I have my eye out as Hannah would say and will be reading more on this with interest. For the moment I am happy to put it on my radar as a point worthy of consideration. I am working through what this might mean for Hannah and more broadly for students receiving special education services. Is it something that we as special needs parents should be thinking about differently - should we be taking up this cause?

It is a complex issue. It could be the way to change the discourse on education for our kids. Davies posits that there is a need to develop alternative assessments for students with additional needs to more accurately measure competencies at a less complex level. There is a need to more accurately diagnose higher and lower achieving students. One possible strategy being to measure progress rather than specific levels. There isn't an easy answer but by golly I think it is a great question.

One of my concerns is how this data could potentially be used. One of my criticisms of the funding model in NSW as I have experienced it is that it is closely linked to an IQ assessment. So $$ is poured into EI. Children have an IQ test to determine the level of support they qualify for in school setting. For us that meant a largely non verbal child who was not fully toilet trained and who has the not uncommon traits of Down Syndrome (such as she gets tired more easily than regular children, she is less confident physically so more likely to fall over or require help walking down stairs and around busy playgrounds etc) and clearly had social interaction deficits that aren't going to be magically dealt with by even the best general social skills program - received less funding because she could achieve at a reasonable level in that *** IQ assessment. I would hate to see governments use progress in naplan results to continue to scrimp on funding for students with special needs in mainstream schools. I'd also hate to see secondary schools deal with the competitive market pressures they face by attempting to restrict enrolment of students based on naplan results.

On the positive side - we are lucky in that I am confident that the school my children attend are doing a brilliant job with her academic learning. I am satisfied with the IEP and the reporting system being used. It is insightful, fair and useful. But there is the risk that this is only the case in our case. An ad hoc approach to curriculum for students with special needs leaves our kids vulnerable to neglect or incompetence - whether intentional or not. There needs to be flexibility for the individual but at the same time to be able to track performance of specific students over time - to assess and develop best practice - would be invaluable. In fact it would be inclusion.

I'll be keeping my eye on this one I think.... my mind is not made up on it at all.

The Davies article is published in Australasian Journal of Special Education vol 36, Issue 1 pp62-78

Friday, July 27, 2012

pink butterflies

It seems a long time ago that I stumbled upon a blog A, B and C's Mom...I read about Joanie and her daughter Carly with great interest. Carly was a little older than Hannah and on the same mainstream journey. It was at the time when I was ansgting over choosing a school for the twins. Things weren't necessarily all roses and rainbows at that stage for Carly at school. Joanie was obviously feeling very worried about ensuring the very best for her lovely daughter. Then one day just a little while later I logged on to see how things were going... and Carly had died. Yep, passed away. I couldn't believe it. I cried. But my tears - they were nothing to the pain of Carly's family. Joanie continues to generously write about and share her journey - because of course life continues, Carly's memory continues, the world goes along...so Finding Our Way provides an insight into life after. I still read it. I still learn from Joanie. Not perhaps the sorts of tips about our daughters with DS that I originally signed up for. But learn I do. About Joanie and Carly and their family. About life and death and hope. Finding Our Way compels me. I read it because I feel a tie to this family - a drive to witness their grief even as that journey reminds me to enjoy what I have. It is life stripped bare. It could be any one of us. I wouldn't want to do it alone and so I bide time with their family. Praying.

I have mentioned before how surviving neonatal intensive care is a battle scar. I continue to wonder when the remnants of remembered fear will pass - to date they can still be revived. So easily. A picture of a weary brave bleary-eyed mum nursing her sick baby in a hospital chair - and I am back there, instantly.  A baby laid out and strapped up as Hannah was before her heart surgery and my breath catches. My mantra follows quickly - B R E A T H E. I see the abyss. I recall the time when I was so terrified of time moving on and with that time my daughter dying that I held my breath. When I breathed it was like stepping back off the cliff face. Back to the verge, to it's relative safety. But of course you never feel safe again. Not really.

Some time ago a mother commented on this blog. Her baby with DS had died. I am humbled and honoured if the Shams creates a bridge for her memories and her child. It is the least I can do.

My pregnancy was the same. I used to envy the pregnant women I met who glowed  bon vivant - deluded that the baby they carried would be born like the fairytale myth we'd fallen for as kids. Not only was it an arduous journey to even fall pregnant - once I was - it was not long before the drs started talking about major heart problems and DS. Oh for blissful ignorance. I tried to make the most of it. To enjoy my pregnancy as if it was my right. But really it wasn't my right. No one has a right to ignorance.

Fast forward a number of years and I get to know a woman with a neonatal diagnosis. A woman of generosity. Her baby is born and there is rejoicing and welcome. A new precious baby. The specific details are not really mine to share - and I'd probably get it all a bit mixed up if I tried but that mother was a warrior for her child. She was an inspiration in the way she created communities around her. We were brought into her experiences. She reached out. It is a tremendous gift. And then one morning there is a post on fb that bubba (home after a long stay in hospital) is not so great - and will be at the local hospital soon.... and then just a couple of hours at most after that, there is nothing. I log on in the early evening to find I have been invited to join a group - I go to the page and wonder at the language - 'memorium' wtf? I have to ask. It quickly becomes apparent that that baby has been freed from her life of tubes and oxygen. She has died.

The connections we make guide us all on this journey and with this passing many will cry. I can't and won't even try to second guess the feelings of her family. I know that I will think of her beautiful face whenever I see butterflies flying free, making our world beautiful, lifting up our hearts. Just like I think of my Mum when I see irises. Awesome. That's what humans are when we are at our best. This baby girl brings that out. I think she always will. She is a celebration that I am lucky to share in.

My friend's next step in the journey will be marked with a church service for her daughter. There are a whole lot of kids and families around Australia who will be there in spirit. Some very lucky ones will go along in person, to take their place as the T21 family. We have said our poor words of comfort - our clumsy attempts to come to terms with this loss, to blunder along in our hope that we might be able to offer some meagre solace to the family. Small gifts. Nothing really, but all that we can do. We reach out too. We know that that action is the most important - even if we stuff it up. In many ways from the moment we start advocating for our children we understand the value of action, no matter how insignificant or inept it might be. You have to start the conversation somewhere. I think this is one Mum who knows that lesson too.

A's celebration calls for bright and pretty pink colours and butterflies...tribute to a life well lived. God speed little one...your angel wings are waiting.

Saturday, July 21, 2012


Holidays seemed to just fly by this time around. I was very lucky to have Dad and one of my nephews come to stay from Brisbane. Knowing I'd have 2 7 yos and an 8 yo in the house encouraged me to put together an itinerary and knowing I would have Dad on hand to help out and keep me company pretty much guaranteed a good holiday.

Our visitors arrived on the evening before the last day of term. Luckily the last day of term was a sports carnival so they got to watch the brats strut their stuff and I was able to get out of work early to join them for a nice lunch.

 On Saturday the kids had the last of their usual activities for the term and Hannah had an 'over the rainbow' party to go to.
On Sunday we drove into the Rocks because the Sydney Observatory had an open day. Boy that was and wasn't a mistake. I have not been there before and it is truly a lovely spot - even just driving about the old sandstone places nearby. But it was SO busy - we couldn't get into any of the 'attractions' they offer - and I had only wanted one to entertain the boys. Crazy because as members of the Powerhouse museum we can go there for free anytime....at least we got to admire the views and play with some lego and check out the sun through a telescope before heading back to Abbotsford for some gelato. A good day.

 On Monday the itinerary kicked in...or was supposed to.

Like all good itineraries it had built in flexibility. So even though I had thought to take us all into the art gallery in time for the holiday storytelling activity and a potter about Hyde Park...I was able to change tac when Hannah's favourite person (my friends' 15 yo daughter) offered to host Hannah for a play date. Now as a busy teenager I knew that I had to seize this moment cos that girl's holiday diary was no doubt already chockas. So I dropped Hannah over there and when I came home I gave the boys the choice of park or library. They chose library. I then made a tea cake and my girlfriend, her daughter and Hannah joined us for a cuppa.

Tuesdays was planned as Powerhouse days and as I had prebooked and paid for activities there - there was no changing our minds. The first Tuesday I had booked the fellows into a scratch workshop for 50 minutes ($10). Dad and I played with Hannah in Wiggle world and then my MIL joined us at the cafe and we all went to the Narnia exhibition. Everyone enjoyed the exhibition.

[BTW - no I do not want Kit to grow into a computer geek and yes Scratch is pretty geeky - animated software design - so the boys learned to create a game of pong..that is write a computer program. Yes they loved it.]

Wednesday I had arranged to meet a 'virtual' family at our local park. It was lovely meeting them in 'real time' and I look forward to catching up with them in the future. They too live in Sydney but further out than me.

Thursday ... I had booked us in at Kuringgai National Park for one of their holiday workshops - I met two wombats. I had thought that getting the three kids out into the bush would be a nice change. Daniel's grandparents (other side of family) rang though and arranged to take himout so in the end it was just me and the twins which was actually very nice. It meant we had a lovel time together and my Dad got a bit of time to hiself and Daniel got to play with his 'other family' in Sydney - so very good all round. The workshop on wombats was very simply pitched but my kids both enjoyed it - it was just right - not too exacting but pleasant and they had fun together. It was nice to go native in the bush even if it was only for a few hours. When we got home we built a couple of the Lego holiday projects I'd bought.

Friday ... my day. I drove out to the national park to retrieve the camera I had left there and then pottered through a shopping centre before slowly making my way home. I met Phil after work and we ate out at a bar before catching the bus home at a very respectable 9pm. A good night.

The weekend was spent pottering about, not doing too much. On Saturday Phil was busy so dad and I took the kids to Sydney University - tot he Nicholson Museum to see the lego model of the Collosseum. It was really cool and the kids loved the grassy quadrangle. It was a bit of a damp and cold day otherwise I would also have walked them over to the duck pond which is another lovely part of the Uni. Anyway I'd highly recommend the Nicholson - it is free and child friendly and the lego model is there until next year - it is open during the week and I think on the first Sat of each month. I know that I will definitely go back.

Kit came home and tried to recreate Monet's garden with lego. Have I mentioned how much I love that boy?

For Sunday I had been going to join Dad and the boys on a picnic with my sister's inlaws (cos they live in Sydney and wanted to spend some time with their grandson) but the Armoury at Newington - it's a great place but pretty full on - too full on for Hannah (she had had a busy week and I wanted her to rest up).
So she was going to get a daddy and daughter day while the rest of us played at the park...except as usual there was not a single park to be had. I dropped off Dad and the boys and went home. We live near the Armoury so it was no trouble to go and pick them up later in the afternoon. That meant that there were now 3 of us mooching about at home so we all went out to a cafe for lunch and then we went and finally bought Hannah the new bike she has been longing for since Christmas.

Monday was actually one of my favourites of the organised activities. A friend from work had raved about the Rocks Museum. I'd never heard of it but when I googled it I found that it had free Discovery workshops for the school holidays. We hopped on a train and went in to it. It was really, really good. We walked around to a former convict house (M. Reynolds) and the kids played this great visual game - where they were given a pic of a modern artefact and had to then try and locate the 'then' equivalent - so hannah had a pic of a coffee mug and Kit a box of tissues and a handbag and Daniel a green shopping bag.

One child got a vacuum cleaner and another a shower...so of course we all went outside to peer into the well that would have been used for the family's water. Then the guides set up a few simple games that would have been played by the Reynolds children and that all the kids there enjoyed too - like hula hoops, quoits and hopscotch. In the paved courtyard and the dappled light - it was lovely. Back at the museum they then had a dress up session and an old style family portrait. My 3 all dressed up as children of the period and I suckered my Dad into wearing the Patriarch's nightshirt for it too.
 The kids then did some colouring in and cut out paper puppets - it was a great activity - well paced and very accessible. Afterwards we went and had an icecream and although i had planned to treat them to MacDonalds at Circular Quay Hannah was clearly knackered so we ended up back on the train and I got them Maccas at the drive thru to eat at home. That night we went to the local Club for some Chinese with my inlaws. It was great value and a good night.

The next morning Phil's face looked like it had exploded. He stoically stayed in bed all day refusing to go tot he drs. I took the kids back to the Powerhouse for their second workshop - Minecraft. For this one I had booked in Hannah as well as a schoolfriend of theirs - a boy who Kit plays with a lot and Hannah loves. Well Kit and his friend had a blast. Daniel managed to enjoy it and work out a bit of what to do and Hannah also gave it a go although she did tend to get a bit more frustrated - no doubt because she was stuck with me trying to follow the tutors instructions in helping her. the tutors were good but it was really difficult for her to follow and Kit was having so much fun totally engrossed in the virtual world set up with his school friend that I didn't have the heart to drag him away more than once to help her. Still I thinks he liked it and I learnt a little bit which is quite useful given how passionate the kids are about the game. Somewhere in there I rang and made a drs appointment for Phil for Wed and then we all came home and the kids got bonus time to sit on the computers and play minecraft.
Wed found us back at our local park - I had arranged a playdate with a school friend fo both kids - a little girl who Hannah particularly likes. the same morning her old friend who is now homeschooled texted to say that they would be at the park that afternoon - so I suggested if they could make it a bit earlier it would be great as hannah would already be there and she'd be absolutely thrilled to see Gen again. Int he midst of our park visit I left the kids there with Dad while I popped home to take Phil to the drs. he looked terrible! The Dr said it was the first time he'd seen this particular disease - mumps. Yep, poor man - apparently it is very rare these days cos our kids are immunised and most of us had it as kids...anyways it meant almost 2 weeks off work...
By Thursday I was pretty weary from our busy schedule. I left the kids with dad and went and did our big grocery shop then I called around at an old friend's place for a cuppa.
Friday...The boys were pretty much on the wall so I left them at home quietly reading on their beds while Hannah and I took her new bike to the park and then went and had an icecream.
Here Hannah is being transformed into a mermaid.

Before I knew it the holidays were over. Dad and I took the kids to the park for a play (Phil was still homebound with illness).
 I can't explain the smurf-face except to say that my cleaning her room lead Hannah to finding the Barbie makeup that she got for Christmas. I believe that she thought she was preparing for a party?
Last day together - what better time could there be for painting and explosions?

A good two weeks
Then on Sunday at 6am our visitors left. It had been a very busy quite tiring but lots of fun holiday. Kit rattled about our quiet house desperately missing his cousin. hannah cried at the drop of a hat I think she too was missing our visitors. Much as I loved having them here though for me it was a great day. I pottered about - restoring their room back into a 'spare room' doing some washing and finally I got the bubble bath I had planned all holidays...then to cap off my perfect day with my family - take away for dinner. For me it was then back to work... the twins stayed home for one more day - and 'looked after Dad' for me....and now it seems so long ago. We are at the end of our first week back and soon Phil too will be back at work after his illness...and on his final day he bought us an SLR camera...so I am not getting your hopes up...but I am hoping to play with taking some better photos - look out for an 'arty' post sometime soon...right here :)