Tuesday, March 31, 2009

Rumble in the Jungle

We had a lovely weekend here in the Dock. Sat we went to the Baptist church for a T4321 event organised by Hannah's ST. On Sunday we went to our church for mass followed another T4321. Both wre lovely - a chance to mingle with other families from our area as well as spread the word about the joys of 'something extra' aka Trisomy 21. Gerard O'Dwyer came and spoke at one of the events - it was great to listen to him. Then on Sunday night we had an impromptu bbq with our frineds who live around the corner - it is my godson taht the brats are wrestling int he photo below! I just love watching the 4 kids together. Hannah is so full of life and fun when she plays with R - it is magic.

Wednesday, March 25, 2009

Swimming Lessons

The brats love their swimming lessons at the local pool. I started them there last year in Tadpoles. Kit has since been promoted to frogs. The instructors have a lovely gentle manner with kids and while I sometimes think that if I put Han in the specal needs class with a 1-1 instructor she would be able to become a 'frog' more quickly - I like the chance to just let her have fun with a small group of kids. They both cope very well with not being in the same class which i hope will help them in kindy as they are unlikely to be int he same class and then later on when Han may have to go to ta diffeerent school from Kit. Before Han can become a frog she has to demosntrate a set of particular water skills. One is floating on her back as a star for the count of 3 - she can do it but she loves the game so much that she often rolls back over after '2' in anticipation of seeing the instructors face go "Aww hannah! - 3!" Don't know what they can do about that one!

Tuesday, March 24, 2009

On finding a 'good' school

I have tidied up the language a lot! I needed to get todays crap off my chest - so here goes:

I am on the open day treadmill as I type having visited an infants school earlier in the month and a local catholic school today with three other open days still on the to do list.

The whole process is disheartening and incredibly daunting. In spite of having been a high school teacher for nearly 20 years I found myself in tears raging, wondering what is the point of education?

Both schools I have been to have been are perfectly adequate and have good reputations locally. What I don’t understand is why educators aren’t beating down my front door. Here is a professional institution with a passion for learning – so why is it that they aren’t amazed and interested in my daughter’s progress?

I want a place where my daughter is welcome. Why do I have to negotiate with a school to accept my daughter and then try and stuff her into their square hole – my beautiful, fun loving, hard working little girl deserves so much more than that.

I get the theory that my daughter belongs in a regular classroom. I believe it too. Due to funding limitations that mere fact indicates the dilemma I have – my daughter’s not ‘disabled’ enough (Down Syndrome isn’t a significant disability? On what planet does that idea come from?). The state expects her to be in a regular classroom and so do I but without adequate support and expertise we are setting her up for failure. I discussed this reality with today’s Principal – and oh yes she understands that point very well too but the mother in me cries out to teachers and principals like her - why oh why couldn’t you say – “yes I know but we are really keen here at adapting to meet your daughter’s needs. We will go out of our way to help her adjust and meet her potential.” Instead at both schools they have been quick in linking me to various bureaucratic requirements such as IQ assessments that may get her some funding for support.

Why is it always about how she will fit in instead of how they are going to do their jobs and draw out at least some of what she is capable of? It’s not that hard – I’ve been doing it ever since she was a baby – and she is remarkable. She also has significant speech delay, takes longer to respond to questions while she processes what she is hearing and then forms an answer and is far better at visual cues that just spoken ones.

Today I am tired and I am upset. Neither school have done anything ‘wrong’ but they have been acting to their formula and I feel like I have to ‘prove’ my daughter worthy rather than they convince me that they can meet her needs – that they have that standard of excellence. All the gifted and talented programs and the Smart boards in Sydney wouldn’t be able to compete with that. Now that would be a school that educates.

Monday, March 23, 2009


I have been over at Pinwheels - very glad to hear that Avery and the rest of the family!! are recovering so well from OHS. There were comments about music - and how some of us had 'special songs' that remind us of that difficult time - when we handed our kiddies over to the surgeon's knife. Ours was this little beauty from The Velvet Underground:

I'm sticking with you

I'm sticking with you
'Cos I'm made out of glue
Anything that you might do
I'm gonna do too

You held up a stage coach in the rain
And I'm doing the same
Saw you're hanging from a tree
And I made believe it was me

I'm sticking with you
'Cos I'm made out of glue
Anything that you might do
I'm gonna do too

People going to the stratosphere
Soldiers fighting with the cong?

But with you by my side I can do anything
When we swing
We hang past right or wrong

I'll do anything for you
Anything you want me too
I'll do anything for you
Oohoh I'm sticking with you
Oohoh I'm sticking with you
Oohoh I'm sticking with you

We sang it as we walked Hannah up and down in recovery and then Kit too when he was in isolation with meningitis at 3 months.

Another favourite - that I still play regularlyt hat reminds me of Hannah is of course Jack Johnson's Upside Down - it is my anthem for DS and the way I feel about our little redhead.

Hope everyone had a great World DS day. Pekka Kusisto and the Australian Chamber Orchestra were FANTASTIC - and I toasted teh T21 community as promised.

Tuesday, March 17, 2009

Come Home ...

Dad went back to Brisvegas for a weekend visit - his work have asked him to stay up there for at least a week or so. I sent up this pick of the twins singing 'home' for him - I hope he gets the message and comes back soon - we miss him

Sunday, March 15, 2009

Still Alice

I have just finished reading this book - and I loved it. I chanced upon it last payday - trawling, hoping ofr something inspirational to read. It has nothing to do about DS but everything to do with difference, perception, society and our most intimate relationships - I can't recommend it highly enoughh - a great read.

Wednesday, March 11, 2009

Some pics of the brats

Peek-a-boo! How are you?
Amazing - a photo of Kit sans computer - I have to fight these days to get a turn on it.
In need of a shoe
Cindarella's shoe on Mum's big foot? I don't think so!
Happy Girl ... Gorgeous Girl ... I really am so lucky to have two such beautiful brats - ah the wonders of modern ART

Hannah is peering out the window to see if it is still raining. We went to the ENT today - 2 hours in a small waiting room with 2 4year olds - yup! Fun - then by the time we got home it was raining - so cabin fever allround in the Dock tonight.
The brats love building things at the moment - paper airplanes, duplo, mobilo - and Astroboy!

Tuesday, March 10, 2009

I love books

Spent far too much money on Amazon.com recently - but what a lovley parcel that should be arriving at my door in time for the school holidays - these two are at the top of my 'can't wait' list:
I also got Pearl S Buck The Girl who Never Grew and the Elephant in the Playroom. I was going to get Chris Burke's book and a language skills int he classroom but my credit wouldn't extend that far - next time!

Monday, March 09, 2009

Behind the times: DS IS Contagious!

This article by Wendy Holden has been around for a little while I think - but it is the first time I came across it - I think it is lovely. FYEnjoyment:

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Remins me of Rick Hodges Dealing with the tradgedy of HB Syndrome which you may recall starts like this:
"As the father of a child with the common genetic disorder known as Down syndrome, I have learned about all kinds of disabilities affecting children. I was shocked to learn, though, that the most common genetic problem striking millions of children today gets very little attention - human being syndrome (HBS).

and he ends with:
"I believe the parents of children with disabilities should extend our hands to help parents of children stricken with HBS. And when you see them on the street, try not to stare. Just treat them like everyone else."


Friday, March 06, 2009


Yippee - the booking was made last year - for non foodies I know it will sound incredibly decadent - like we are imposters who haven't been watching our peenies and trying to get back as much aas we possibly can on Hannah's private ST sessions - still - Dinner at Tetsuyas - I can't wait!

It used to be a little byo restaurant within walking distance of where we lived - and even then expensive - I think it was about $80 or so... now he has moved to swanky surrounds, the price has gone up and bookings have a cancellation fee - but oh my - the food!! Bliss.

I think I am lucky to have somewhat flush friends who are foodies - as they organise outings like this one for this weekend - last time we went there was well before the twins were born so maybe 7 years of so.

Wednesday, March 04, 2009

Open Days

Well hello - for a while there the 'm' key on the laptop died - it made posting anything rather difficult!

Today is the first of a string of primary school open days that I am going to. Hmm. What am I looking for?? I haven't done this before. Basically I am going to be looking at the glossy face of each school and trying to discern a very important piece of information - will this place be the right one for the twins to begin their formal schooling at.

Today it is Russell Lea Infants - this one hadn't been on my radar but a couple of mums (one who has a younger child with DS)has said that it is great. The principal 'fantastic'. The next one only occurred to me yesterday when another mum was saying it WASN"T the school for her little one - apparently the Kindy teacher has a Montessori approach. It is the Catholic school from my inlaws parish - not far from us and I tend to go there for mass once a month when my own church has mass in Italian. I quite liked their handbook which I looked up on the net although I can't stand that fake must have 'normal' ordinary haidrstyles blah blah blah stuff that 'old fashioned' schools go on with - surely they should consider the child within? (and rely on the commonsense of parents?).

Then I thought I'd best go to the open day for the Catholic special school that EVERYONE raves about - even though it is about a 45min drive from home. There is another local girl who already goes there so they could share a car. And FINALLY (I hope) our local catholic school. The PP insists on the families being regular members of HIS parish church - not a problem for us as we do go there 3/4 of the time. At last year's open day I was impressed with the Assistant Principal (who has now left ...).

So what is my checklist?
Welcoming of Hannah. Willing to do their best to accommodate her needs. Some support or expertise available for her eduction.
Pleasant environment. Grounds for playing. Music, sport and dance opportunities. Parent involvement in the school (I"d like to help with reading recovery or Multilit).
Not too many OTT requirements about being a 'good catholic' - even though I think I am one!!lol!
Preferably local. Good activities and excursions. A teaching team that works well together - how do I find that out? A principal that promotes inclusion. A way of challenging Kit - just in case his grandparents are righht and he is gifted and talented!!lol!!!
A strong literacy and numeracy program for Han. A good science program for the boy. Peers that are positive with minimal bullying.

How do I find out all these things?? Wish my intuitive radar luck - it's going to be working overtime for the next 5 weeks.

I should add that I am very happy with the twins' preschool - however the attached school has a special needs unit - Hannah probably won't quyalify for it yet I worry that in the playground she will be linked to those kids - and hence won't end up anywhere really [funny enough - that is probably her schooling future anyway] a 'special needs kid in the regular class - and all the adults waitinga round for her to 'fail' so she can be moved to where support is more adequate - hence my plan to go have a look at this special school while I am at it.

THANK YOU - A HUGE thanks to the lovely Joy form Sheena Times - we are going to meet and greet the Wiggles when we see them next month - Hannah is going to LOVE it!