Monday, October 25, 2010

Buddy Walk

The day before the Sydney Buddy Walk was a glorious sunny srping day. The day of the walk it was wet and miserable. Much as I hated to - I chickened out. I invited our team of walkers over for morning tea instead - as I had been baking into the night some treaties for the picnic! Lots of other people who I was really looking forward to catching up with braved it though - and one of my ex students a young woman from Kuwait whos sister has DS went as a volunteer so I was very sorry to miss catching up with her. I am however very impressed that she has said that she had a great day and that maybe one day her sister will be able to take part ina buddy walk in their home country - how cool would that be?!
Dress ups Our faux Buddy Walk

Tuesday, October 19, 2010

Shall We Dance?

It took me a while to decide to change Hannah from music to dance. She loved music but the fingering on the keyboard was just so hard for her to master and with Kit on the book ahead I could see how much harder the program got in a short space of time - and so we moved her. Well she LOVES dance. She looks forward to it like she does Rainbow CLub. I think she has her first 'crush' - on her dance instructor - a lovley young man who also knows Auslan. I don't hold out great hopes for a professional dance career - in fact I have had a couple of nightmares about the upcoming concert - I can see the other girls (most of whom are precocious, bright little things with blonde hair of course - although why they must have blonde hair I don't know!) all doing what they do - being graceful and quick in their movements, looking beautiful and there in the corner I see her - a little girl looking lost - perhaps she is curled up in a ball on the ground refusing to look around at the audience, maybe she stands somewehre off centre stage, soft red hair falling down in her face, still like a statue... or maybe she will do as I hope - shine. With her gorgeous smile and her whole body enthusiasm throw herself inelegantly around the stage, follwoing the lead of the other girls and smiling - with maybe just a wee moment where she sends a special smile to her adoring family...
Ah but what happens as with many things in life - something that I have to wait and see. She will do whatever she will do - and we will make sure that whatever happens she feels good about it. That she feels special and loved and capable - just the way she is.
Another more practical issue is changing her costumes - we had a practice on the weekend and she will definitely need some help - so somehow I will have to duck backstage between her numbers to help out - and I just know that I will be graceless moving past the rows of audience members, pushing thorugh backstage, looking for my daughter and then juggling, clothes, glasses, shoes...
Here are some pics of the home costume practice!

Sunday, October 17, 2010

Now we are Six

Hannah loves her ipod. Eventually we are hoping to use it to aid her communication and as a help at school too.
Kit opening his present from hannah
The birthday cake
Arriving at the party
The day before the twins turned 6 as we headed out the door to go to school - Kit came up with my old copy of the AAMilne book Now We Are Six. He thought that it would be 'appropriate to read it now'LOL!
Hannah flirting shamelessly with the trainee swim instructor just a few days before was showing him her big tummy and telling him she was 5 now - 6 soon. So for their birthday festival:
On the night before we went to Livvi's Place (a fantastic allabilities playground) with the grandparents and some extended family members. Then I came home and baked a chocolate cake, that wonderful young girl - my girlfriend's daughter made 50 cupcakes for the twins to take to kindy - so I iced those as well. Then I put up a few decorations, finished wrapping their gifts sorted lolly bags for the party on Sat and made sure their uniforms were ironed and ready for the next day.

On their birthday Kit woke up early of course and Hannah wasn't far behind. Yes we succumbed - Kit got a DS and Hannah an ipod touch. So yep - an expensive birthday - we got them each a small toy as well and they got each other a little toy too.
Then off to school. At assembly it is customary to call up the birthday kids and give thema s ticker and some applause. The twins loved that! Then they gave out their cupcakes at recess. In the afternoon tehy went to their Nan and Pop's - were they got more gifts. I picked them up and we raced home - for a couple of our closest friends were coming over for an early dinner of cake and pizza. Kit had the worst night - up constantly - saying he was hungry, that he couldn't get to sleep etc DH and I took turns at trying to calm him down. At 3 o'clock in the morning I was sitting up with him while he chomped on a banana!
Sat was dance for Hannah (they have a concert coming up so we couldn't miss it even if she wanted to - and she wouldn't cos she absolutely loves it!)
Then Kit had a green party cos his music class is moving up a level to the green book. A few hours rest - and down to the local gym for a kids gymnastics party. It was the windiest day - and as a teacher I know that always sends the kids a bit crazy but still - as the kids arrived fo rhte party - tehy were so hyped up and wild!! We had invited 24 kids - all from kindy excpet for a couple of close friends - one of Kit's from preschool and 2 little girls with DS (another little one form Han's EI and now from Rainbow club wasn't able to make it).
The parents are all so friendly and were also clearly ready to relax and enjoy the party. It was great. The kids had an absolute ball - the gym instructor was fantastic. That afternoon we brought two abosultely buggered kids home - they revived whowever to open all their presents - the number of which was obscene really - but I don't know how you can avoid it - we only asked the kids that they mention all the time - the ones they play with - and as a parent I always want the twins to pick out and take a gift - it is part of leanring to give after all. ANyways - they had a ball opening their gifts - and I have to say - sucha great mix of thoughtfully presented loot... no wonder the brats were happy. Then because Sat was actually my brithday - take away for DH and I - a nice bottle of chardy - lovely.

Today was a beautiful (windfree) sunny spring day - so I got loads of washing done, the kids played iwth their gifts, DH did some gardening, I got in a bubble bath - all good int he DOck - boy I feel so blessed on days like this!

Anyways some observations formt eh aprties and life in general.
hannah has started ot hang out with the girls at school. She has started to develop some lovely deeper friendships with acouple of boys (real sweeties) - and in many boys boys are easier - especially these ones because they are so motor driven! but ust lately witht he school really encouraging her to work within her reading group independently she has also developed a wonderful friendship with acouple of the kdis from there - and in particualr a little girl called G... who when we ask who she plays with - sounds so cute as G's name is long and difficult for her to say. The other day she brought a tear to my eye - 'G... is my best friend' she said.

At the party I briefly wondered how the other kids would react to Hannah and Kit's friends who also had DS. F and S. I wasn't worried as I thought that it would be fantastic for them to see that there were other kids out there - that Hannah wasn't the only little girl with DS. Well when F arrived I held her hand and took her intot e gymnasium. Now she is a beautiful little girl who we have known since she was tiny - she and Hannah were in group together for years of EI. She has better tone than Hannah and in many ways is much more like the stereotypical kid with DS - in that she has the beautiful smiley face and is more confident and gregarious iwith strangers and crowds. So when I introduced her and the instructor asked her age - one of Hannah's frineds a little girl called udrey - said to me 'Does she know sign language?'You could see that she was excited at the prospect of using her own signing skills to help another little girl - so I replied "Her speech is clearer than hannah's but you are right she has DS too. WIll you look after her for me?' I got a big smile and nods from Audrey and the gilrs with her. Later on when I was going through the photoes that DH took - there are lots with Hannah near F and Audrey and co around - in some holding F's hand. I am so proud of those kids. I think that they are great examples of inclusion.
Then S arrived a bit later. She knows DH better from Rainbow Club so I asked him to take her in. She also got in line and was enjoying herself. Later on he said that one of Hannah's friends a little boy called D - asked him if she 'was like Hannah?' To which he replied that yes she did have DS. D replied 'I thought so x thought she was just being silly.'
Everyone had a blast. Me - I am happy for htem to stay 6 as looong as possible.

Wednesday, October 13, 2010

October is Down Syndrome Awareness month

DS has been on my mind a lot this month. We have our buddy walk coming up in 2 weeks which I am really looking forward to. Our first one was in 2007 and we had a ball. I hope this year's is a cracker as well. I have spoken to a couple of journalists this year in relation to DS. Neither knew very much about it. They both asked the standard questions. I need a more pat answer to "So do you think enough is being done to support people with DS'. You see - for us at the moment - things are going swimmingly. Sure some things could be improved - but that is the case I am sure if you asked any parent of any child - there are things we wish we could do better, or ways we'd like to support our kids more effectively etc.

If my response to how Hannah is going is full of positive things - like she loves school, has lots of friends and a couple of really good friendships developing, that her teachers are brilliant in their approach and acceptance of her 'differences', that she adds to our family just as Kit does, in her own way... then I can almost hear the guy switch off - as if he is thinking - so why all the fuss?

Well this post is me trying to work on my response - to make it clearer why it is precisely because things are going well that it is so important to rally the troops, to raise awareness and lobby for better supports. See what can be achieved? Well imagine if... and not only that but this isn't a quick fix - the issues will no doubt continue and some will change as Hannah gets older. The gap between ability and disability may widen - but I can't see evidence that support increases incrementally at all. I can see the level of support we get by on at school being stretched a bit further each year - and if resources aren't improved then Hannah may have no choice but to leave the school where she has had such a positive start. She may have to leave a place where she is known and accepted and wanted. If a minimal level of resources aren't available to facilitate her place there - then where do we go? With support she should be able to finish her primary years there. Yet that's just the start of her schooling - HS is way too far ahead, then employment, activities and hobbies, independent living - these crucial issues - I must wait and see about - but I won't be caught out - there are HUGE shortfalls between what is required and what is available. Others in front of me report back amongst the 'special needs' community/networks. And so every chance we get - we lobby, we raise awareness, we rally the troops.

We have to. We can't just sit and hope or struggle on alone. The issue is far too important to leave to chance, basic human rights are at risk. It is essential not only for our families but for our society. When I ask my students what is the most common ground of discrimination complaints in NSW - they generally say race, then women, then... a whole heap of others. They are always surprised when we look up the annual report and see women, then disability as the most common grounds for complaint of discrimination. Sigh. It's a task that would seem overwhelming except for all the fair minded citizens who listen, learn, care, and act. Who tell their stories over and over until they feel like a broken record, who open their minds and ask questions, who take the opportunity to learn about life in another persons shoes. Who get on with living the best way they can, who share the richness of their experiences with the rest of the world. Who celebrate the many things we have while at the same time trying to redress all the things we still desperately need. Yes Happy Buddy Walk - I love our slogan - 'Celebrating 30 years. We've come a long way baby' - indeed we have - and still we march onwards, lobbying, raising awareness and rallying the troops.

But it's not a sound byte is it? I'll have to think on it a bit more....

Monday, October 11, 2010

Last bit of the Holidays

Well, Term 4 started today - only 10 more weeks of kindy. One week until the twins turn 6. My how they have grown. Both have had a little spurt over the holidays. Kit is reading chapter books more, he is also staking a claim to greater independence - like getting his own breakfast. Hannah has had a fantastic surge in her speech - her utterance length is at least 5-6 words and she is putting more endings on her words. We are all looking forward to celebrating their birthdays....
While Hannah was making beautifully hand crafted playdoh cakes, Kit got out the blocks and using the info booklet from parliament house did some building - didn't he do a great job?!
Gappy. Hannah has had an adult tooth emerging behind one of her front baby teeth for ages. We ahve wobbled her baby tooth for ages hoping ot encourage it to move out of the way but to no avail so on Sat DH took little brat to the dentist to get the deed done. She was, of course, an absolute trooper - me a snivelling wreck.
For the concert Hannah needed some black jiffies or jazz shoes - we got them on Friday.
Soccer Time - Thursday the twisn and I spent a somewhat grumpy day hanging out at home and recovering from our minibreak to Canberra. Friday we were obviously back inotthe swing of things cos we had a great day and got lots of little things done - including a game of backyard soccer.

After haircuts it was time to paint. PS I asked the hairdresser about my curling woes - the decision was to cut her hair short so that they wouldn't be required - and then I was given instructions on how to pin it so it looks good for the concert.
Hannah's craft - Hannah likes airplanes at the moment - here is one she made herself - she kept pestering me for 'more sticky tape' so that she could get the job done.

Thursday, October 07, 2010

Last Days

At the end of the first week of holidays a friend of the twins from kindy ( and LDC before that) came over for some cooking. The plan had been to make cheese...kindy have been learning about it - from the cow tothe fridge - and how cheese is made. One of the kid's parents run a fantastic italian cheese shop near the school - so kindy went on an excursion there. they also watched a youtube clip on how to make paneer - which got Kit all fired up - he typed up the recipe from memory - it is one of his most adorable bits of 'work' - so we just ahd to do soemthing aout it these holidays. Unfortunately the son of the 'cheeseshopowners' had to cancel - so int he end the kids I had made pasta and decorated cupcakes - it was a lovely day.
Making paneer
For Hannah's dance concert the little girls all need curly hair. I don't know how to convey my reaction to this piece of news. I was informed of it by a 'ballet mom' - not someone i know well - I am so NOT a 'ballet mom'...anyway - it is not an overstatement to say that I hyperventilated at the thought of it. I recall when hannah was about 4 I had to apologise to the therapist with the flashcard of a hairdryer - there was no way any child of mine would recognise that picture! Anyhow 'ballet mom' was quite hepful in calming my nerves and demonstrating soem bizarre hair ritual apparently known as 'rag curls'. I think she knew how the curls were going to turn out...
On the Saturday morning as we dawdled through our day we decided to go ahead and make the paneer - milk and lemon jouice - who'd ahve thought. We usually have Friday as Curry night inour house - we moved it to Sat night in honour of the big block of cheese the family made. DH was so impressed with t he results that he temporarily took on the idea of moving onto making cheddar - until he sat down with the Cheesemaking book we'd been lent - cheesemaking is pretty technical it seems and requires some specialist equipment too. Finished paneer and rag curls
More bird's nest than curls I'm afraid. Not sure where to go from here - might give it one more try otherwise I am going to get her hair cut in such a short bob that noone can expect me to produce a head of curls for the concert.
We took the twins to hte national capital for a holiday. All was going well until onour first evening we arrived at a very old friend of ours' place for a bbq - we'd been there less than 30 minutes when Hannah threw up - all over her fatehr. We got out of there quicksmart - luckily with a packed meal to take home - Dh sat up with little brat until midnight while I had a kip and then we swapped. We sat beside ehr and each time she woke up and vomited - one of us was there to make sure she 'spat it out' and that there was a bowl handy so as not to destroy the hotel carpet. Poor little darling was so stoic about it all. The next morning she hadn't been sick for a bit and had drunk quite well and kept it down - so off we drove to Floriade - the spring festival with about a million tulip blooms on display. It was fantastic - of course just after we arrived Hannah threw up again. Still we soldiered on - thinking it was the car that had made her feel sick again and not wanting to brave another return journey just yet... Now many mums of kids with DS have got fantastic photoes of their kids with tulips. A little tribute toour joureny through Holland as Emily Perl Kingsley so famously wrote in tryng ot dscrie the exepreience of being a special needs mama. Now in Sydny I live in 'little Italy' and I am pretty sure that Hannah spends a good amount of her time in 'Italy' but she and the rest of us also spend a good amount of our time in holland - the land of widnmills, tulips and Rembrandts. I ahd already told DH that I really wanted some nice pics of little miss with the tulips. After the vomit episode all I could say was - at the first garden bed of tulips we saw: "Quick - take a picture before she gets sick again - I want my tulip photo!!" Come rain hail or vomit I was determined to get my tulip photo.

From up on her Daddy's shoulders (which is definitely one of her favourite places to be)she can see a rainbow of tulips...
In a sea of tulips I spied Mum's flower - I love when her memory so sweet creeps up on me...and the irises were just beautiful.

Kit at the Dusty Boots Show. they had buskers at FLoriade - the stunt man asked for volunteers - and Kit raised his hand - the guy wanted some 'cuteness' on stage - so no wonder he chose my Kit. Dusty played the digeridoo and got Kit to play the clap sticks. He did well! and had fun.
Lake George Zebras
As we were driving into Canberra past the inland Lake George (which ahs not had a lot of water in it for years now) I told the kids to look out heir window for the zebras. Dh claimed to not know what on earth I was talking about - but htese zebras have been a bit of a hit this year - some wag put them in the middle of the lake (where it is dry!) and so fromt eh road it looks like the grass plains of Africa - with a group of zebras on it - rather freaky if you don't know that they are fakes. Anyhoo - they weren't there so DH was ragging me for being wrong (some men never learn!) - so imagine my joy and surprise to see them - at FLoriade. hannah was thrilled with them. One of her favourite sayings a thte moment is 'want that one NOW!' and she kept repeating that phrase as she and I checked out he zebras. I told ehr to speak to Daddy about getting them for her. SO when he and Kit joined us she was very unhappy to pose in photoes witht hem - she wanted her Daddy to take the baby zebra and it's mummy home - not have a photo of them!
In the afternoon Hannah and I went back to the apartment where she tortured me with palying with ehr dollys and dancing to Hi5. We also managed to go for a walk to Manuka which is a nice part of Canberra. While Hannah recovered at the apartment Kit and DH roamed around the sights of Canberra - they went to Questacon and Parliament House. On our last day after breakfast out the boys went to the Australian Mint and Han and I checked out the new indigenous wing of the National Art Gallery - it was fantastic! Today we took it easy as we were all a bit tired and happy to chill out and recover from all the excitement of our minibreak/illnesses. Kit had a sibkidz event in the morning which he loves going to and little brat did great for her ST - put lots of ends on her words - b, p, t and s. Still has trouble saying k and ch and sh and g but they'll come .... eventaully.
And so our holidays are almost over. I have begun reading my Agatha Christie Omnibuses - I read a whole heap of them whilst I was pregnant - and am quite enjoying re-reading them - so goodnight - onto the Sleeping Murder.