Bars are Down

I've always liked Roger McGough. I was reading some of his poems last night - and post Hannah - this little gem caught my fancy:

Bars are Down

When I was a lad

most people round our way

were barzydown.

It was a world full of piecans.

Men who were barmy, married to women

who wanted their heads examined.

When not painting the railings,

our neighbours were doolally,

away for slates.

Or so my dad reckoned.

Needed locking away

the lot of them.

Leaving certain McGoughs

and a few close friends

free to walk the empty streets

in peace. Knowing exactly

whether we were coming or going.

Self-righteous in polished shoes.

Picking our way

clearheadedly,

bewteen loose screws.

Blogging Against Disablism 1 May 2008

You broke my heart – Blogging Against Disablism

DisAbility, difference – they aren’t particularly new concepts to me. I grew up with a sister who is profoundly deaf. She is also vision impaired although we never really viewed her that way – so she is blind in one eye and has sight loss in the other – it isn’t a disability – not like being unable to hear in a family that loves music! I should have known better.

I am also a teacher. I mainly teach high school students. I love it. I don’t fight for the ‘top kids’ like some do – I enjoy all sorts – or so I thought – until the radical day (yes in the 1990s!) when a young woman with Down Syndrome came to our school. She wasn’t even in my classes – she did a ‘special program’. But oh – how much I learned about her – after I left that school. While I was there I mostly agreed with the teachers who loudly claimed she would be better of at a school with a specialist unit – who could cater for her needs – I nodded agreement unthinkingly because these statements were being said by women I admired – with greater knowledge (or so I thought) of the educational system than I had. The special ed teacher warned us that this student could be lazy – and manipulative to escape work. We were to treat her like all the others and yet she was spoken about as a devious young child (she was 18). This student was in my roll call – she followed routine, grimaced when I passed on messages sending her to the special ed teacher, and came from a very loving, supportive and protective family.

In 2004 my heart was shattered – in my ignorant bliss it never occurred to me that this could happen but Hannah found the fault line – CRACK! My own daughter was born with Down Syndrome and she needed major heart surgery to boot! I learned so much about that young woman who had been at my old school then. I learned how amazing she was. How strong, brave and determined. I also realized the extent of my prejudice – and it scares me to this day – because this is what Hannah will have to face.

My heart isn’t broken at all anymore. In fact – she forged it together as if of steel. I cry at anything, I try and listen with an open heart, I feel vulnerable most of the time yet I know my heart is strong – Hannah has shown me what I can do. In watching her remarkable spirit I strive to deserve her in my life, to always do the best I can for her and to demand it of others. My past experience taught me not to judge too harshly but to advocate strongly. It is in opening to others as Hannah does that we can overcome the ignorance of ‘disablism’. That is why I wholeheartedly support the wonderful notion of Blogging Against Disablism – I hope you do too.

Well I arrived at the local government preschool at 8.15 - they'd told me to be there at 9 but some more school savvy mums had suggested I got there early. I sat outside in the sunshine a bit embarassed to be there so early (I don't like to look too pushy!) I was chatting to a little boy and his nonno when the person taking enrolments raced over and asked if I was there for preschool - she pointed me in to the office - and yes there was a queue! Still I got form number 7 - so fingers crossed that after the sibling priorities they can find a place (preferably 3 days) for the twins. Even though they were busy and the woman quite brusqe I got a good feel about the place. It would be a great way to prepare Hannah for mainstream schooling. The hours are a lot shorter than long day care but because it costs so much less I might be able to cut my working hours without much loss of income. Fingers crossed - I'd really like to give it a go! My form went in at 10 to 9. It's crazy really - eduation shouldn't be such a scramble for so few places.

After dragging the twins around there (Hannah was horrendous - in high spirits and ready to explore the old building!) and the local supermarket I got them ready for hte new term of swimming lessons. They have a new instructor - she seems nice. THe twins liked her. She is stricter than the last one. Maybe that is a female trait? Certainly Stefan was great - he had a good balance in his approach but you wouldn't say he was strict - firm but not really strict. Anyways they liked it so fingers crossed that goes well.

Then we went to Hannah's EI for the afternoon session. Mmmm she was definitely NOT at her best. Getting back into things after a big morning meant that she was very tired and consequently less cooperative. She normally loves participating in group and she wasn't too bad but definitely not up to her usual stance. She really loves puzzles and matching games at the moment.

The letter from the ENT came yesterday - grommets to go in on the 24 June. Sigh. I was feeling ok about it - so wasn't too overjoyed when I rang preadmissions and was told that I had to take Hannah in a couple of weeks earlier for blood tests. Why blood tests I foolishly asked? So we know her blood type should she lose a lot of blood and need a transfusion - HELLO????!! ear thingies please NOT major heart surgery. Hannah (and Kit) have a rare blood type and she has already had a blood transfusion after her heart operation - I was trying to keep this 'little' procedure in perspective!

We had two parties to attend on the weekend - a baptism and thenn a friends 38th. Both were lots of fun - clearly too much fun for Hannah as she woke up about midnight with a terrible tummy ache and didn't go back to sleep until about 6am - lying moaning and crying much of the time. Needless to say I had to take Monday off work (not a great look on the first day of term) as she slept late once she did go back to sleep and I couldn't be sure it was just the huge amount of party food and sausages that she'd eaten until she woke up from her sleep. Thankfully it was as she woke up quite sparky although she was also ready for a mid afternoon nap as well.

I don't have any photoes of the baptism yet - Baby Evie looked gorgeous but I am going to be indulgent and put up some nostalgic shots of the twins' baptism instead. Next Sunday I get to be godmother to Sasha - followed by her first birthday party - it should be lots of fun.

Conny Wenk

Whoo Hoo - I am slowly getting the hang of this modern age - my first online order through Amazon - I have been nagging P to order me my Roadmap to Holland copy for AGES - and it just wasn't getting done so I took it into my own hands - it wasn't too tricky at all. That put me in mind of Conny Wenks lovely book Three Little Butterflies - but how to order a German book - through German Amazon!! I kept hoping I was clicking on the correct keys - there is an email confirmation in German in my inbox so I think I did it - now the long wait for snail mail to swim down under!!

If you haven't seen Conny's gorgeous photographs - click on the title and it will take you to her blog - it is gorgeous.

Heroes

Well my holidays are drawing to a close and in spite of the fact that it has rained EVERY SINGLE DAY!!! I have had a great time. Monday was my only day with no kids in tow so I got my hair cut and did a little shopping. Tuesday a friend and her 2 littlies came to lunch which was lovely. Wednesday I had a couple of friends and their kids over (we were meant to meet at a local park but it was raining) and then I called in at work for a bit, caught up with the woman I am jobsharing with next term. Thursday my MIL (definitely one of my heroes!) came swimming with the twins and I. They just loved it - Hannah 'talked' or squealed for most of the hour and ahalf that they were in the water - she is a danger in the pool - she has the nerve of Riley! Kept waving 'bye' to me as she wanted her independence. Marea and I didn't get to stop once while we were in the pool with them. Afterwards we met P for a coffee near his work and then did a grocery shop for the long weekend. Anzac day was disgracefully slothful - I did a couple of sewing projects and the twins watched far too much tv.

This afternoon I went to the Diana exhibition at the Powerhouse - it was FANTASTIC! I went with my best friend - and we had high tea afterwards - such a lovely outing. I was meant to go and babysit her daughter (and after next weekend my goddaughter) tonight but little S has a temperature so instead P has their tickets to the footy and I am at home with the twins.

Kit is obsessed with Superman - thanks Pop! Hannah also likes to gad about in the cape - she wore it to look at a house for sale and another little girl (about 2 yo I guess) kept coming up and touching her, cuddling her and even gave her a kiss - far too cute! We are still trying to find a house to buy - it shouldn't be so hard - we only want something modest but to afford that in the area we rent seems near impossible!

Tomorrow we are going to a baptism - my MIL is being godmother to her goddaughter's daughter! and then drinks to celebrate the birthday of a really dear friend - so it should be a lovely day. Work on Monday ...
I finally finished the quilt I was making for our room
The scrappy quilt I made for Baby Evie's baptism

Volvo Dancing

We visited some old friends yesterday. They have just settled on a new house - yes I am jealous - not because I want their place, although it is very nice but because for them it is over - imagine no more having to deal with realestate agents - BLISS!!

Anyways the kids had a lot of fun. I have a wee rule that if Hannah want sot be able to climb up on things then she needs to be able to do it herself - ie I figure if she can get up on her own then she is less likely to fall off and hurt herself. First it was the wall between the two terraces - she was determined. I refused to just lift her up on it so witha few attempts she got up on her own. And loved it:


Who needs a toy car when you can have so much fun on the family Volvo?

Holidays - Week One

Holidays have been pretty quiet here. Hannah had swimming school every day so on Monday Kit had his first solo day at childcare and Hannah had her first solo lesson. They both did well. Saw the ENT today and as expected - grommets - I am waiting for htem to mail out an ifo pack including dates for me. Otherwise a quiet wet week. We visited the grandparents a couple of times which was nice and got some winter goodies at Target. Next week no swimming classes but I have planned lunch with a friend and her 2 kiddies so that will be nice. Hannah had her flu shot on Tuesday so I am glad to get it out of the way - I missed the window last year and consequently she seemed to have a runny nose for most of the year. The house hunt continues which is giving me no end of grief - I so wish it was over! We made an offer on a nice place but someone bid more... so it goes - oh well - 2 more hopeful houses on the market to look at this weekend - it doesn't help that our 'acceptable area' seems to get smaller each month - now that I have my hopes set on the local gov't preschool for the tiwns next year we need to try and stay in area if we can (not a big burden as we love it here - but it is a bit on the expensive side for us).
After a week of swimming lessons every day Hannah no longer kicks her instructor in the head when he tries to get her to float on her back. I bet he was pleased!
Hannah is getting the idea of buoyancy

Hi 5 - Hannah's instructor always does the hi-5 with her after he has nearly drowned her - she loves it!

Melissa Riggio

I just went to look at one of my favourite 'feel good' blogs - Emma Sage to learn some very sad news indeed. Melissa Riggio was both a DS 'superstar' and an ordinary woman who happened to have DS. She was certainly an inspiration to me and I know that one day she will provide hope and inspiration to Hannah. May she rest in peace.

Wiggles Concert

By chance I happened upon the Wiggles website (linked to the title of this post)- one day beofre tickets for their SYdney shows went on sale. When I told the twins I had tickets for us to got hey were very excited - although the fact that it isn't for about 6 weeks confused them. Still Hannah was so excited she put on a dvd and one fo Kit's Wiggles t shirts - and got ready to rehearse for the gig! I hope they enjoy it.

NSW Down Syndrome Association

Hannah's diagnosis opened up a whole new world for us - and a community that is very important to us. I have met some amazing people - with and without DS - all touched by a diagnosis of DS. NSWDSA was the gateway in for me. When I joined they didn't have a blog and I don't think there was a forum but they have both now - as well as a wonderful team of people there to support us families as we join together on our own unique yet similar journeys.

The title of this post links to their blog - the photo of a little girl Persia and her brother Tyler (who has DS) in the Local Eyes exhibition is beautiful. This week we have also attended a children's tea party before the gala fundraiser "On a Wing and a Prayer" and a morning tea for World DS Day at our local church that was organised by one of the families but promoted too by DSA. Their marketing manager has a little boy at the same childcare as the twins - he has attended 3 functions in just 10 days (as as his wife been at 2 of them!) - it is that sort of dedication and spirit that are part of this world that Hannah has given us entree into. Lovely.
The tea party provided the twins with their first ever face painting experience. They loved it - Hannah got a heart and a star but they were both pretty faded by the time I got home to take her photo.

Sad

I took Hannah to the audiologist this morning - her hearing is worse than last time. Looks like ear tubes are a definite - her ENT was on leave - he is back next week so I have to ring first thing as the audiologist seemed to think that he would want to squeeze us in next Friday if he can. Doesn't sound good does it? When I got back to the car I cried. I feel like a goose - it is NOTHING like the AVSD repair - logically I know that but I have this numb, sickening feeling of dread, it is out of all proportion to what will probably happen to Han but there it is... I can't help it. All I can see is her lying on the bed in PICU after last time - looking so bloated and so glassy eyed, totally unlike my beautiful baby. I never took photoes - I couldn't bear it - now I wish I had because maybe I could have de sensatised myself to the experience a bit or at least put it in perspective!!

I have been looking up Dr Google - and the forums - one mum described the procedure as a 'speed bump' in her day. Oh well - needs must - so let's get ready to JUMP!