Dancing and Parties

Hannah is loving dance. One of her teachers also volunteers at a school for the deaf - so he knows Auslan - which is a HUGE bonus for Hannah who LOVES signing. She has been enthralled with the costumes and the moves and looks forward to going.
We ahve also had a 'festival' here in the DOck for DHs birthday. Family parties and then recently a gathering of old friends for lunch. One of the activities de jour of the kiddies was to sticky tape pencils to each finger ala Edward Scissorhands although Hannah liked it when I referred to her special'rainbow hands'.

Boys

I am lucky enough to be able to help in the classroom - today I was helping a little group - we were cutting and pasting a story sequence into booklets. The kids started chatting - it started about brothers and sisters I think - anyhow one little fellow says "I hate girls" and another one (a really good friend of Hannah's!) says "yeah, me too. I hate girls, except Hannah, I like Hannah" lol! It wasn't just cos I was there either - so I chipped in and said that I knew he was a a good friend of Hannah and then I reminded him of his 2 gorgeous little sisters at home. Then a third little boy pipes up with "I am Hannah's best, best, best friend." Gotta love the kindy kids. You never know what they'll do or say next.

Bonds

I heard a story from a couple of other kindy Mums the other day - there is another set of boy/girl twins in kindy and the boy half was upset and crying. Kit tried to comfort him but it wasn't working so he went and got the little fellow's sister to help. General consensus was that that was such a 'twin thing' to do. Lovely.

Have a Chat - the tween years

In Sydney I made friends with a girl I'll call K. Adjusting to life here wasn't that hard for me. There are a few humiliating moments - like the way other kids laughed cos I wore the 'wrong' jacket - and then called it a 'Parka'!! (My school in Sydney was very middle class - the one in Brisbane more working class...) and then the fearsome grade 4 teacher who made me repeat over and over 'off' without the 'r' in the middle in front of the whole class - sure cured me of that QLD accent! And in it all I made friends with a girl called K who was to be a very significant person in my life until my early 20s when we lost contact altogether. I still think about her and wonder. I'd love to 'peek' in the window of where she lives now - I can imagine the scene - I hope i am right - cos it would be a loving and warm family lounge that I'd see... just like her family that I belonged to for what in the end was quite a brief time really.

She came from a reasonably well known family(one of her uncles was Police Minister). My family were country queensland - do I need to say more? You couldn't get more divergent political and worldviews if you tried. My parents liked the then Premier of QLD Sir Joh Bjelke Petersen - who ruled his corrupt state with an iron fist. Firmly repressing civil disobedience or even the right of his citizens to protest. He used a gerrymander to maintain his power. My folks loved him. It was all to the power of the individual.

Her family were unionists and/or labor party politicians and/or a bunch of 'lefties'. I recall watching with great joy Bob Hawke win a federal election at her place one year - K, my boyfriend of the time (yep now my DH) and I. Her family were no doubt at the Catholic Club - a regular venue for election events.
But that was later - at first we were just 2 girls who were drawn to each other. She had beautiful eyes and gorgeous skin with glowing hair. I was rough and ragged - a tomboy. We'd argue politics - each repeating what we had learnt at our parents knee - for that was something we had in common - both our families had riotous debates around the dinner table about the world and politics in partiuclar - and children were encouraged to participate. We used each other to test the worldviews presented to us at home.
Sleepovers weren't a big part of growing up but if there was such a beast in my childhood - then it was the first time I stayed at Ks house. I remember her Mum coming in and saying 'goodnight girls' as she made the sign of the cross on our foreheads - it is something that I still do to the twins when I sneak in for a final glimpse of them sleeping before I too go to bed.
And so we went from primary school and endless discussions of the current tv drama series - the Sullivans to highschool together. Here the pool widened and we became part of a friendship group of girls that would see us through to year 10. For our final 2 years of school we moved to a different local catholic high school - and there I met up with the man who I have now been married to for 16 years - of course I didn't realise that was what would happen for quite some time! She and I and a couple of other girls formed a clique - she was always popular. Pretty and fashionable and talented. Me - I was still awkward and 'different' but I was happy with that. With K as my friend I was guaranteed to negotiate some of the turbulent adolescent years without too much stress or pressure. We loved music - my tastes had always been at complete odds with my contemporaries until then. Think Johnny Cash to Johnny Ray an you get a glimpse of the picture! I took to the indie rock scene like a duck to water - I loved that it was 'teen' and 'rebellion' and 'adolescent' but not mainstream - heaven forbid that after all my years on the road less travelled that I should fall into the mundane ticky tacky boxes of poetry and pop. So like many teenagers - we thought we were cool and so were our friends...
During this time K and I went from my attending her family functions and going away for holidays - oh how I loved hearing her father come into our room in the morning booming out a dreadful version of "Oh what a beautiful morning!". I liked her cousins and really felt welcomed into a large loyal family unit. Her father was a large man who was easy to like and someone who you just had to respect - he was a man who had charisma. Her Mum was a stay at home - something I'd never experienced - I saw it as very unusual. She was gentle and kind. K was naturally very generous. I recall once when her sister no longer needed her side chest of drawers that K asked if I wanted it - I had those draws for many many years - in fact even after I had left home and was living with my future DH I had them. Eventually they had to go - as we moved into a small workers cottage of our own that did not have room for lots of furnishings. Anyways we went from holidays with our families to going away with our schoolfriends - no parents required.

K went from school to teacher's college. Me I hadn't planned out the future quite so well but I did a year later join her at teacher's college. She became a primary teacher, me high school. During those wild years we drove to college together went out drinking together (champagne? Absolutely!)and saw lots of bands together. We had a lot of fun.
K finished her studies a year before I did and got a job straight away. I had another year of College before I too started work. These two years proved to be quite pivotal in our losing contact with each other. K was quite clear in what she wanted from life. My family decided it was time to return to QLD so I moved out with DH's sister and a friend from school. This friend is still dear to me today and so is my SIL. I love catching up with them because it is like being 'home' even though of course so much has changed since 3 gals shared a house together for a few years so long ago.
K had a plan for her future. She had matured beyond the seeing bands and hanging out with old school friends playing scrabble. She became quite secretive about her boyfriends - perhaps because she knew I didn't really trust the ones she had had -and sadly when she rang to invite me to her engagement party I had to ask - who are you marrying? It was a boy I knew from school - but I had no idea. I have to confess that I probably would have been a bit judgemental and that may well have deterred her from being open about it. It isn't any comfort that I heard not long after the wedding that the marriage had failed. I had felt so sad that I wasn't at that wedding and when I finally married my childhood sweetheart there was a part of me that was sad that she was not there. I had always thought that we would stay friends. That she would be there. She had been such an important part of my life. Through good times and bad she had known what to do. Instead I had no idea where she was at all. She had disappeared from my life for good. As I still think about her now I know that her support and friendship, the people that she was interested in befriending - had a profound impact upon my life. I still see many of those friends. I am in fact happily married to one of them! So there - I owe her still and where-ever she is I sincerely hope that she is happy.
"Have a Chat' is in fact because of her - it is a 'Dad Joke' from my father that I love. Over the years she would ring our house and ask for me - and when Dad asked she'd say she was just ringing for a chat - hence he'd belly laugh and say to me: "Haveachats on the phone". Sometimes I wish she still was.

Have a Chat - the early years

I have been thinking of a few things lately - mostly because I'm feeling a bit reflective - at the top of the list is who I was, what I expected to be when I was a grown up and given that at over 40 I am undeniably a 'grown up' (of sorts!) - who am I now? What happened along the way - what were some fo the most significant things that have guided and shaped my journey?

I know a number of people on the 'special needs journey' who quote the very applicable and lovely road less travelled ... 'and that has made all the difference'. What bits I wonder have made all the difference for me? I can tell you I have felt that I am on the road less travelled for a long time before I became a 'special needs mama'.

When I was 10 my family moved interstate from Brisbane. There I was part of a pack - my cousins were very close - for my primary education there we all went to the same catholic school - the one that was local to where my Aunt and her three children and my Grandmother lived. I recall being happy go lucky. Family drives. Lots of visiting of rellies - I remember not being able to visit my grandmother on Saturdays as she would be glued to her old radio listening to the 'gee gees' or horseracing as it is more widely known. I remember my eldest sister stage managing us siblings and cousins into 'performances' and dress ups. I was particularly close to one cousin and she and I would walk the streets for hours just passing the time...

My mum's family were country folk - her Dad a boundary rider/rabbiter/horsebreaker etc in swQLD. Dad was a city boy (if Brisbane in the 40s and 50s was anything like a city!!). He met her when he went to visit one of his sisters in the country - and stayed. He was 16. She was 18. They got court permission to marry (as he was under legal age then) and were married on Mum's 21st birthday.

Both my sisters were born in that country town. The middle one of us 3 girls was a rubella baby. She had to go to Brisbane for heart surgery. She was vision impaired and profoundly deaf. I imagine that was a significant factor in the family moving to Brisbane. My grandmother and aunty moved there too around the same time I think. My aunty never divorced but I have no memory of her husband at all - as far as I know he can still be found in that same country town.

As the baby of the family I was very spoilt. I don't recall any resentment of my sister who was deaf. I remember being friends with her, sharing a room with her. I remember her fiercesome temper tantrums and the teddy bear that she has still that she loved - he travelled with ehr when she was very young and she was sent to a baording school for deaf children. I know that she was homesick - especially after an aunt who had been living nearby the school moved away. I remember driving down to visit her.

Now as Hannah's Mum I can only imagine at the stress it must have put my parents under. To send off such a small and cute little girl off to school. It is a school that was very well known at the time and is still well known by many. It was run by nuns. I fondly recall the home film of my sister at the sports day - her cheeky grin as she ran along the logs and jumped around, happy. After a time though it just wasn't working - she was so homesick. How that must have hurt my parents. How they must have agonised over what to do. In the end she was brought back home and enrolled at the state special school for blind and deaf children. I can't recall much of who she was then - to my childish mind she was just my sister. Dad and my eldest sister attended workshops for cued speech I learned a form of pigeon sign language - taught by my sister - complete with 'deaf speech'. For example instead of signing teacher correctly I would repeat back how she said it 'bibi' and she would read my lips to know what that was.

Once we moved to Sydney she went to a school for deaf children here. Adolescence was hard. There are so many things from this time that I wish I could change. I don't know if they would have made a difference but they would have been worth a try. There was a time when i was so angry and resentful of my sister that I hardly spoke her name. I saw Mum and Dad struggle with how to help her. She was furious and so lonely - it must have broken Mum's heart. When she finished school I know how very proud Mum and Dad were of her - She got a regular job. She saved her money and travelled overseas. Dad would drive her into the deaf club each week so that she could socialise with the people she desperately needed support from - the deaf community. This was mostly a good thing but there was also some bullying and teasing which was hard for her to manage. They were also beaming with joy for her when she got ehr licence and bought her first car. Eventually she fell in love, got married and had 3 beautiful children. Her achievements still are wonderful. She has succeeded in living well, in creating a home, in coping in a hearing world. She is a strong advocate within the deaf community. She is a lovely and funny person. Loyal and still fierce. Incredibly intense in her passions and her anger.

She has taught me so much about myself and our family. She is a guide for me as I try my very hardest to be the best parent I can be for Hannah and Kit. The things I look back on and see in my parents - some of those are now my experience. Some things I look back and see in my sister - are Hannah's and well - some of mine - they will be Kit's - with a twist - a very important and significant twist. I truly believe that it is so much easier today - I have wonderful supports available. I have experience to tell me to make the most of them. I have an online community that is pure gold. Knowing that my family 'survived' and 'thrived' means that when I first got Hannah's diagnosis I felt more ready than if I had had no experience of difference and disAbility. That road less travelled? I was born on it. I never knew other kids who had siblings with a disability although of course they must have existed! When I was out with my sister her voice had the tone of the deaf person. Our fingers would fly and people would stare - yes I was brought up knowing that life isn't a one size fits all affair. It has stood me in good stead for the me I am today. I felt comfortable (mostly) being different because it is all I'd ever known.

Dance

I finally bit the bullet and changed hannah from music to dance. I felt a little sad writing a note to her music teacher - she has been fantastic and Hannah has loved going and learned heaps but truly in her best interrests - I know it is time to move on - to Dance!
Unfortunately I couldn't find a suitable special needs dance class but this local one was recommended by one of the kindy mums - and they have a great attitude. There are 2 teachers in the room and one of them volunteers at the local school for deaf and blind children. Hannah had fun. I know it was the right decision - now for the dance wardrobe....

A letter to Murray

Last week on one of our free to air commercial networks there was a fluff piece about a teacher suing the gov for damage to her voice - allegedly incurred as a result of 'yelling' at her students. It was a brief segment - one of the 'social commentators' on the 'news' panel - let it rip with a short but really ugly tirade against 'special needs' kids - 'these kids' - the 'r' word - the details aren't really that important - it was short and ugly and idiotic. There is a facebook group formed specifically in response to the segment and to stand up for our kids - this letter isn't for her.

That news story was depressing - but what happened on Fri night was definitely coloured by it.

I went to see Lisa Miller in concert at Newtown. While there I saw Murray of red skivvy fame down the back. (He has excellent taste in music btw - we also spotted him at Leonard Cohen last year). I felt myself thinking about the Wiggles then - and of our meet and greet with them about 12-18 months ago - at the theatre not far from where I was last night in fact. And I felt myself tearing up - and there were a number of thoughts running through my mind - the main one being about what a fantastic job those guys do in including kids of all abilities and needs - in a way that is respectful, compassionate and caring. Their integrity is impressive.
It isn't really the Australian way to go up to celebs that you see out and about - we try to keep it low key - especially as I know he lives in the area - he wouldn't want to be pestered everytime he went out. Still it played on my mind - how much it means to our families that such famous and wonderful kids music performers always find time to include our kids - not in a patronising way. In a real way. I thought of all the blogs I've read - and so many of them included a Wiggles concert - and a number of those included the 'meet and greet' - in fact that is how I found out about it - I asked other special needs mamas. They advised me to 'write a letter' which I did and then I got the phone call followed by the email. Before the concert we met the wiggles. Hannah and Kit were absolutely thrilled and to be honest - I was quite excited too!! It was a real treat - followed by a fantastic concert - and then lunch at a local cafe - a day I will always remember.
At the end of last night's show I pushed DH over to say thanks - which he did. Murray was as expected absolutely lovely - as DH said - "I have a 5 year old daughter with Down Syndrome. You met her for a photo opp before a concert last year - I just wanted to say 'thanks''. You could see his smile light up. I also got to chime in my thanks too - I couldn't really put evertything I wanted to say into words - I would have cried and the poor man was out and about enjoying his Friday night after all!! I am still not fully satisfied with my 'open letter' but such is the nature of owrds - it is really hard to capture everythiing I want to say with them. Still I have to try:
"Dear Murray (and the other Wiggles too!!)
I want to thank you for the joy your music brings to children and families. As a parent of a child with down syndrome I love seeing children of different needs included in your videos - in fact one of Hannah's friends appears in "Getting Strong".
I love being part of an online special needs community because as much as I love my daughter and rejoice in her accomplishments it can sometimes be very difficult and isolating - there is still so much prejudice and ignorance in the community about disability and difference.
I first heard about your 'meet and greets' on some US blogs. Each parent so happy and proud to show you their children - and to meet you guys. I asked Sheena of Sheena Time how she got to meet you - and so I did the same. Preparing the twins to meet you was a treat in itself. Kit drew a blue Mr Men style picture (cos that was his thing at the time!) for Anthony and Hannah drew a couple of pictures - one for Murray who she thinks is like her Dad (because he plays guitar too) and one for Sam. She forgot to bring them but was so star struck to meet you all in person she forgot to mind.
As we moved over for our turn - Murray came over and knelt down in front of her (boy he is so tall!), Anthony thanked Kit for the picture and held it aloft proudly making sure the photo worked. Jeff and Sam were smiling and relaxed. For our family it was a very special memory - so often our kids aren't 'seen' but you go out of your way to see them and show them to the world. I can't thank you enough for that.
Best wishes
S"

So there you have it - the light in the darkness when people like Prue Macsween spout her poison is strong - and it comes from lots of different people...together we really are strong and that is what our kids deserve. In fact it is their right.

Holidays - Week One

We have had a great week here in the Dock. I just love the school holidays. The kids have mucked around home, gone on some outings - like Toy Story 3 and the Abstractions Exhibition at the art gallery. Tey ahve done a little school related stuff - Hannah's teacher gave me a little 'gift pack' of cutting activities which Hannah loves doing so we ahve done a few of those. They both were desperately tired and in need of this space. Hannah ahs had an oozing ear infection since the alst day of term - hoepfully it is gone now (fingers crossed) as if not I ahve to take her back to the drs because she will have been on antibiotics for the recommended time limit of 10 days.
I have also managed to start a Bargello butterfly quilt in Bali fabrics. I bought a Snow White panel which Hannah is excited about having made up into something for her. Tomorrow we ahve another kindy birthday party to attend. I am sure that they will be happy to see some of their school friends again.
We took the twins out of Sydney for a drive in the country - Richmond and Windsor which are in the Hawkesbury region of Sydney - everyone had a great day. We had lunch at a local cafe which of course the kids thought was a real treat.
The twins and I made some honey cake - check out how like the picture in the recipe book our efforts were!!
Fifa Fever has been here in the Dock. Dh has been getting up at 4.30am to watch games - our teams of course dropped out early but there has been plenty of enthusiasm anyway. Kit and his dad had a few games of soccer in the back yard - excuse DHs spotty pjs on the line - that is the goal area!
Winter is well and truly here so it was lucky that I had a little free time towards teh end of semester to quilt a couple of lap quilts for the loungeroom. I am getting tired of waking up toa wet deck every morning at least the skies are cloudy but rain generally holds off or is only very light.

My brats have really enjoyed the first week of their holidays.
The holidays began with a lovely party that the twins and I had a ball at - and then some new boots for each child as I realised (doh!) that they couldn't wear their school shoes all holidays...
Myself and some galfriends kicked up our boots at the annual turkey cooking festival. Anthony's AMAZING and DELICIOUS pumpkin pie made it back on the menu - by popular demand.
Hannah's chopping skills, like her cutting skills at school - have gone from strength to strength!

A Party