SHAMPTONS

Holidays are over

2012-02-18T04:58:00.000-08:00

Hannah LOVED this kayak that our friends have. The twins and I drove down to 'crash' their family holiday on the south coast. We had a blast.

The day before school resumed we took the kids into the Powerhouse museum.

Wiggleland was a big hit but I think Hannah's favourite was the climbing structure in the playground.

Just before school returned one of the girls in Hannah's year had a 'pamper party'. It was scary how naturally the girls took to it...like ducks to water!

In the holidays Hannah clearly established that she can ride her bike all by herself.

She did it because she is so keen to show us that she is ready for a byke like her brothers:)

The New Year

2012-01-20T23:03:00.000-08:00

Just after Christmas we went to the Australian Museum for the Canning Stock Route Exhibition of Aboriginal art - it was great - plus thanks to fb I have been able to keep in touch with my QLD cousins - so we met Ch and her partner there too - they were holidaying in Sydney from Cairns.The next day we went up to Pearl Beach where friends of ours had a holiday house - we went up for lunch and a swim. We don't often go tot he beach - except for January - when we normally rent a place for a week somewhere near water. This year after our European Extravaganza it was decided to forgo our usual summer holiday, so visiting our friends was a great way to still feel that we were on holidays even if we weren't going away at all. The kids as usual had a blast with the sand and the sea.

One of Hannah's friends from kindy who is being homeschooled now invited us over for a swim and a play. Hannah was very excited and was keen to scooter over...we had a lovely day there.

One of the best things I did was book the twins in for a holiday intensive swimming program - a week where they had a half hour lesson each every day - and we then usually stayed at the pool for a picnic afterwards. On three of the days one of their friends from school joined us for a play and some lunch. It felt like we were truly on holidays.

Both the kids had awesome swimming instructors.

Then we had a family lunch to celebrate the January birthdays - after which my SIL's 4 children came to our house for a couple of nights. The twins were in heaven - Hannah was especially excited about the idea of a 'girls' room' and Kit just wanted to play with his cousins...They are good kids and we had fun. It rained for a bit which was frustrating but once the sun came out and my MIL came by to help me transport them to the local park - we had a great time. They also did some baking of chocolate cupcakes and made pizzas for dinner one night. On their last day with us their Mum came and got them - but took them (bar her youngest) and Kit to the Harry Potter exhibition at the Powerhouse Museum.

Then last night we drove out to Orchard Hills to see an outdoor production of Jack and the Beanstalk. It was great value at $10 a ticket and we had a picnic dinner and a play at the park that was there too.

I have also done a little sewing - a beach coat for me and then a short set with the left over fabric for Hannah

Not Just Pink Anymore

2012-01-20T22:08:00.000-08:00

Just wanted to give you a heads up - Hannah has a blog of her own. Well I will be it's 'caretaker' until she wants to do it for herself. I have added the link to it on my sidebar. It is called Not Just Pink Anymore. I hope you come and have a peek - and that you enjoy it!

Christmas

2012-01-12T04:25:00.000-08:00

Started with a Christmas tree and two santa sacks:

Lucky while O/S a little forward planning kicked in - this bauble is courtesy of the Ufizzi Gallery

and Buckingham Palace:

and Domayne at Alexandria - but hey - it's as close to Paris as I could get for now :)

And so the scene was set. We had made our gingerbread house, baked our Christmas cake and steamed our Christmas puddings. On Christmas Eve the kids participated in the children's pageant:

Kit was a shepherd and Hannah an angel:

After mass we went to our friends' annual Christmas Eve do...always a pleasure. Then home - the kids to bed and Phil and I to do the last of the wrapping etc and share a glass of wine together...before the madness of Christmas morning.This year Dad was not with us. It was the first time I can recall of waking up with just the 4 of us together - the twin's first christmas doesn't count cos we were all in hospital and Kit and I were in a quarantined room a couple of doors down from Phil and Hannah. It was also the first of the three years we have had Christmas Day lunch at our place that in the midst of cooking and getting ready for the extended family to come over that i haven't madly hustled everyone out the door to go to morning mass...overall I have to say - that extra time at home made a significant difference to my stress levels.

I couldn't resist buying Kit this copy of Gallileo's temperature gauge

And we got Hannah yet another outfit

After lunch and presents, the kids all did some drawing then it was a lovely hot day so they ran about under the sprinkler before dessert.

Santa was pretty good to me too - I got The Diamond Queen - an autobiography of Queen Elizabeth as well as another great holiday read: Death at Pemberley which I am reading at the moment.Another fave gift I got was from my sister:

Under The Pepperina Tree is a memoir of 2 friends growing up in country QLD during the 1950s. These women - Brenda and Rosalie were friends with my Mum and Brenda includes some lovely anecdotes about Mum, my grandmother (Esmay) and my Aunty Leslie (Sissy). It is a treasure that I look forward to sharing with the twins when they are older.

Boxing day is one of my favourite days all year. I even like the tv being on with the cricket - it is all part of the ambience. This year we had to take Kit to the park - his first bike without training wheels was a huge success. When discussing which one he should get for Christmas (from Santa) Phil and I were worried that as he hadn't ridden his little one for months that perhaps getting one with gears would be too much...but on the other hand - would last him longer... and the bike Phil liked best wasn't the cheapest...anyways... within half an hour - he was riding it. No training wheels, he even used the gears a little bit. It is a fantastic bike. Specially designed with kids centre of gravity in mind... ByK - kids bikes (http://www.bykbikes.com/). I am keen to see how Hannah goes on one - maybe next Christmas. At the moment she can pedal her bike with training wheels around the table out on our back deck. She loves riding it but does tire a bit. She also quite likes her scooter so I think we'll really push her on those with the view to trying her on one of these types of ByKs in the future. She's got the riding outfit ready to go:

Dancing Hearts

2011-12-11T03:49:00.001-08:00

Hannah had her dance concert tonight - the one for children and adults with disabilities. It was heaps of fun! The dancers all looked great and had a blast. The Dance teacher had put in so much work. It was a good afternoon. Hannah was quite shy on stage but she clearly had a good time. She was also thrilled to see her 'support club' there and to receive a trophy and to win a prize in the raffle. Here are some pics

We also did some Christmas craft in the afternoon

Advent

2011-12-10T14:03:00.001-08:00

Preparing for Christmas is always lots of fun. Money is tighter this year than usual thanks to our O/S sojourn but with the sun shining and everyone in good health there is the same fun as usual to be had. Dad has come to visit for a couple of weeks and has brought my nephew with him - he is 8 years old born 1 day shy of the twins' birthday the year before they appeared. Kit is in heaven and Hannah is quite pleased too.The advent calendars are out - I bought Hannah a tacky Barbie one from Target, Kit has last year's Lego one set up again and there is of course the quilted wallhanging one that is for all of us that Mum and I made together so many years ago when she lived in Gympie. One of the things I love about Christmas is I always feel Mum is right there by my side. I turn around to straighten up a bit of tinsel - and I can almost see her smile, I watch the kids' excitement and I can see the warmth in her brown eyes. Of course it also makes me feel a little sad too - I miss her all the time and would love to be able to put my arms around her, to share some Christmas cake... instead I must be content with a mental nod in her direction each time I think of her this season and a toast whenever I am enjoying her Christmas cake recipe.This year I started the season making Glad Shute's Fruit cake - the cooking time was indeed a bit deceptive but because I made 2 cakes at once - the 3 hours cooking time worked out fine and the one we have iced and started eating is lovely and moist and a little bit crumbly. I still have to make Mum's one and will try and do that soon because I want to send one home with Dad for him and my sisters to enjoy this year.The first cake was officially cut when the Christmas tree went up. Hannah was very excited to go with her father to pick on - just like in the Curious George movie she loves. The inlaws came over to help us celebrate the start of the Christmas season. This past week Christmas cards have begun to trickle in from the kids at school and the round of Christmas parties has started to happen. That began with Kit's music party and continues still. Hannah had a party at Rainbow Club (her swimming class) yesterday. Tonight is her concert with Dancing Hearts - a dance class for children (in one group) and adults (in a later time slot) with a disability. She gets to wear a princess dress and a ballet bun and so is very excited. We have a bit of a cheer squad coming for her so I hope she does ok.I was watching her at dance rehearsal this week and can see that this class is good in developing her confidence - in the other class she goes to with everyone else being 'regular' she really needs to have a partner that she 'copies' in order to stay on track but int his class there is more pressure on her to actually know her steps and do them by herself - so that is a good balance I think. FOr next year we are going to start off keeping both the mainstream and the special needs classes going.On Friday night this week we went to the parish carols. It was lots of fun. We went to support the church (our kids go to a local parish school) and because my MIL is one of the amazing organising women on the parish social committee. I didn't know what it would be like. It might have been boring or full of oldies or ... I managed to wrangle another family from the school who also has twins to come along too. Well I think it is fair to say that everyone had a great night. There were other families there from the school and so the kids pretty much took off as soon as we got there and ran around the hall having a blast. The food was delicious - and the service from those women - inspiring! The Italian womens choir sang a few carols in Italian which were beautiful then we had our chef lead us in a few English faves before a guest appearance from Santa. There were a heap of raffle prizes - Dad scored a fibre optic Christmas Tree which he has put int he kids room - it is very pretty. So yes I think it is fair to say that the grown ups had almost as much fun as the kids.It was lovely to see my nephew just join in with Kit and Hannah's friends. I think it shows how much he has grown up int he past year and how lovely the kids at our school are. Hannah was beside herself with joy because her best friend (who is now homeschooled) was there. The two girls had a blast playing together. Totally unrelated to the season Dad and I also took him tot he Powerhouse Museum and the Harry Potter exhibition that is on there - it was great. Really lots of fun. I loved listening to the other people as they walked through talking about the Hogwarts world and its artefacts and characters as if they were real. There was also a little boy who was divine - "Oh look Mummy! That is Harry's wand. That's AWESOME Mum!' and so on... a delight.Here are some random pics

Christmas Cakes

2011-11-21T14:41:00.001-08:00

We are crazy for Christmas in this house, and 2011 is no exception. So ont he weekend Hannah and I baked 2 Christmas Cakes. Unfortunately while they were in the oven (for 3 hours) I realised that I had left out the brown sugar and then when I checked the recipe I realised that as well as that I had forgotten to put in the required amount of self raising flour. Luckily it still tasted pretty good. So good in fact that I decided to try again - and not leave out any of the ingredients. Now this is a new recipe that i got off the radio - it is a CWA recipe - Glad Shute's to be precise - so needless to say I was quaking in my inner west birkenstocks. Generations of country housewives in my lineage - I didn't want to let them down....After all I was the first child in my family to be born in the 'big smoke' that was Brisbane circa 1960s and then only because my elder sister had been born with a heart defect and profoundly deaf - so the parents moved to the city in search of better resources and services for her...Both my sisters are very proud of the fact that they were born in country QLD. But I digress....Here are some pics of the first bake up - with Hannah. Yesterday I had another go - Hannah is sick with an ear infection so my other helper stepped in (no doubt encouraged by the fact that during the week he isn't allowed on the DS - so he had some 'spare time' to help out). They looked delicious. We'll try one when the tree goes up in a couple of weeks.

Concerts

2011-11-21T14:19:00.001-08:00

It has been a bit more of a rocky road for Hannah in her mainstream dance class this year. She was put up with her age group at the beginning - and it did the teacher's head in because he felt she couldn't remember the routine and he wasn't as tolerant of her choosing to do her own thing. We moved her back to the younger group - same teacher - he is a lovely young man who the kids including Hannah LOVE! I think he was just feeling a bit out of his depth and therefore getting frustrated. He knows Auslan and uses it in class which Hannah really likes. When we were overseas she often mentioned getting a gift for her two dance teachers.

Anyhow the move back to the little class worked well and things settled down. They have great costumes (expensive! but so cute) and a bigger than Ben Hur concert a the end of the year which Hannah was clearly looking forward to - the performer that she is. They have paired her with a little girl who is starting Kindy next year - together they did great! I was so proud of Hannah - she has come a long way and that was obvious on the stage. The number she did the worst on was the ballet and I think that was because the other little girl wasn't in it and so Hannah didn't really know whose lead to follow...but she looked cute anyway.

Now the concert is over everyone is thinking about what classes to put their kids in next year. Me I was hoping it would die a natural death. One of the other Mums was asking me - she was very positive about Hannah and encouraged me to keep at it - as did the mum of Hannah's little partner ... I just don't know. Hannah LOVES it. She is learning and improving. But this is a small establishing studio with ambitions. They were very welcoming of taking Hannah in {unlike the one that didn't call back and when I eventually got through to them declined to even meet her - quite sure she wouldn't enjoy their 'advanced' classes!) but are not really in a position to start making too many adjustments for her IYKWIM. I spoke to the woman at the enrolment counter - perhaps if they continue to pair her with that little girl and perhaps video the routine so she can watch it at home during the week to help her remember? Anyways she was going to discuss it with hannah's teacher... and we shall see... I'm such a sucker - I wish I could just say NO. But then I look at Hannah's precious face and when I ask her about it - she clearly wants to stay... while it isn't affecting her self esteem...maybe....

And now time to prepare for the next concert - this one is her first with a local dance group - for children with a disability.

Post Card 3:

2011-10-23T19:24:00.001-07:00

Our first stop in Italy was Venice. It is an amazing place. Our apartment was well located and on the ground floor, but then I think it is pretty easy to get to most places on the island. It is the lane ways that cause tourists to get lost.

It was still quite busy so I dread to think what it would be like in the high season. It was lovely to walk about cars or scooters etc. The canal is clearly where all the traffic is. We decided to go on a gondola ride. We had the only female gondolier in Venice. It was worth the Euros. Hannah in particular loved it and laughed every time we went under a bridge and the poor gondolier had to duck, and there are lots of bridges there.

There were even more masks so Kit and Hannah chose one each and spent an afternoon preparing a performance for us. It was a lovely relaxing way to spend an afternoon. As was waking to the smell of croissants and bread rolls being warmed up in the kitchenette just outside our apartment.

From Venice we caught a train to Florence. By now our luggage had expanded somewhat so wrangling the children and the bags in an unfamiliar place was a bit of a challenge. Our fellow travelers were patient and a couple lent a helping hand too which was great.

Florence is such a pretty place. Where we stayed (near the Ponte del Vecchio) was more shopping than I have ever seen. The kids were starting to miss home by now but they enjoyed their birthday. Mine was the day after theirs so Phil bought us a cake and candles to celebrate. Kit sang 'happy birthday' in Italian which I loved.

We found a local trattoria which was friendly and flexible. We ate there twice because the kids really liked eating somewhere familiar. On Sunday we went to the Uffizi Museum. I did not know what to expect there but it was fabulous. Room upon room of luscious paintings and rows upon rows of sculptures.

The wait to enter was about an hour so I decided to ask if it was possible for Hannah to skip the queue. One of the museum guards helped us. He was efficient and friendly. Not only did he take us straight in but we all got complimentary tickets. Avoiding the hour wait was a big help because it meant Hannah could conserve her energy for the zillion stairs inside. Inside we each found things we liked. Kit liked an interactive screen of maps and pictures, Hannah the models of the magnificent building. So far Hannah has claimed Florence as her favorite although I think she'd say Paris as well and Kit generally chooses Oxford as his favorite place.

We are now on the home stretch of our 'big holiday' and I have to say much as we have loved it, we will all be glad to get home again. The twins in particular have found Rome very hard. It is a fantastic city with so much to see, perhaps we should have started our Italian leg here instead of in Venice. Oh well, we did manage to visit Vatican City which I loved. It did involve a lot of walking though which was made a little tricky by two weary kids but I still got to savor lots of the Vatican Museum, including the Sistine Chapel as well as squeeze in a fast paced walk through the magnificent St Peters Basilica (we bribed the kids with promises of yet more gelato).

On our last day in Roma we woke up to thunder and lightening so it was lucky that we had planned a lazy day on the hop on hop off bus, still reasonably manageable in the wet. The skies cleared briefly so we also stopped by the Trevi Fountain. Phil took a couple of photos there, I have included the one where I am coaxing a smile out of Hannah, as opposed to the one where she is clearly signing her home address!

Arrivedici
Shelley

Post Card 2:

2011-10-23T19:23:00.001-07:00

Our second postcard from Hannah and Kit's family on their European Grand Tour - if you missed it, the first one is here.

We are having a great time in Paris. It is such a beautiful city even on a rainy day like today. So far the twins favorite spots have been the Tour Eiffel (Hannah) and the Musee D'Orsay (Kit).

The Eiffel Tower staff were very helpful when we asked about accessibility for Hannah, in allowing us straight through - no queuing up - which was great. Little brat loved it as well as the icecream she had afterwards. She still points it out excitedly when we see it in the distance.

The Louvre is an impressive building but not so helpful and with the crowds all ignoring the 'no camera' signs I was a bit put out when we were chipped twice for silly things such as Hannah sitting down (her legs are quite short) with one foot crossed - no shoes on the chairs.

The Musee D'Orsay was much better for us and the art was fabulous. As we had children we were immediately sent to the shorter queue, the one that did not stretch out into the rain.

We have found the French to be tolerant and more often than not, generous with our fumbling and poor French. There are some wonderful green areas but we have not really had the chance to take the kids to a playground, lucky they love coloring in. Which Mona Lisa do you prefer?

My favorite place was the afternoon trip to Giverny. It was good to see some of the lush French countryside and we all loved roaming through the absolutely enchanting garden at Monet's house. A beautiful and relaxing outing.

The sleeping patterns of the kids has just gone downhill in the last day or so so I am not sure if it is a delayed form of jet lag but I can say it isn't very pretty. Hopefully they will settle back into routine soon.

Soon we will fly to Venice. I am sure my carbPrincess will love Italy, the place of pasta, pizza and gelato. How could a little girl not love it? Kit has been learning Italian at school and is keen to put some of his skills to use.
I am sad that we will miss the Buddy Walk this year. I hope the sun shines on a great day for you all.

Au revoir
Shelley

PS With less child focussed things to do we have been watching Ratatouille in our apartment (which does not offer views of the tower but is near the Arc de Triomphe). The ambience of the drawn curtains of our living area are fantastic, so Phil and I get to enjoy the atmosphere and the kids get to wind down.

Our first Post Card published by NSW Down Syndrome Association - blog Keeping Up With DS

2011-10-23T15:53:00.000-07:00

If you are a regular reader of our journal, Voice, you will recall twins Kit and Hannah from the cover of the March 2010 issue - they were about to embark on the adventure of big school.

Now they are on another adventure - a holiday to Europe, during which they will turn seven. Their intrepid parents, Shelley and Phil have agreed to keep in touch with an occasional postcard to let us know how travelling with young twins (one of whom has Down syndrome) is going. Here is the first instalment ...

We are all having a blast on our holiday. We are now in sunny Oxford.

London was great, something for everyone. Hannah loved Lady Diana's Memorial Playground the best, it was a great way to start our holiday as we were staying close to it.
It wasn't until we were well and truly in the air en route from Singapore to Heathrow that I began to panic about how two sleep deprived adults were going to cope with 2 six year olds who, while rested (at least they had a reasonable sleep on the plane) would no doubt be jet lagged at nine am when we couldn't access our apartment until two pm! The Kensington Gardens were a lifesaver.
I had been dreading the long flight, it really is a long way from home. It went very well though.
Getting around London (none of us have been before) was remarkably easy. I can see why people love the tube. I didn't realize just how many stairs this place involved nor how fast the locals move but Hannah has been a trooper and coped very well. Such good transport has meant we have been able to keep walking to and from places to a minimum for her and luckily her Dad's shoulders are at the ready.
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It has been quite easy to factor in some down time for the kids. At the British Museum they saw school students sketching artifacts and both wanted to do that too. So that meant they could relax in one spot while Phil and I got to explore the whole space more.

The Tower of London was my favorite and while the stairs were a shocker for Hannah she kept going and even had enough energy for some races on the grassy moat.
A couple of days we have made sure that at least one of us could stay in the apartment with the kids for a couple of hours in the afternoon while they do some craft or watch CBeebies which they have fallen in love with.
I was a little worried with moving her on to new accommodation in Oxford but again the adjustment has been relatively smooth. The next shift is in a couple of days when we go to Paris on the Eurostar.

Regards,
Shelley

I'm Back

2011-10-23T11:01:00.000-07:00

Well G'day as they say!We returned from an absolutely wonderful time O/S on Sat pm (Sydney time) and it is now 3.45 am (Sydney time - so clearly the jet lag is hanging around). So far everyone else is still asleep which is great. Yesterday I was making toast and hot chocolate for Kit in the wee small hours as he adapted to no longer being on Roma time. Hannah seems to have fared a bit better - I think because she has been sleeping more periodically anyway.... we flew direct from Roma to Sydney via Singapore so about 20 hours in the air plus another 5 including lining up at Roma airport, a brief wait at Singapore and then clearing customs at home. Hannah slept a bit on both flights whereas Kit basically stayed awake for the whole Roma to SIngapore leg and then slept all the way on the second flight (which meant he slept totally on O/S time and none when it was night in Aus).It felt wonderful to be home but we are all still so excited about our time away. We were met by both of the twins grandfathers at the airport - a real treat for us all - it was nice to see the old fellows! Hannah pretty much raced straight to her dress up box when we got in the door after enthusiastically greeting her Nan. After we had eaten a light supper she put on a concert for everyone. Then yesterday I took her to dance practice (there is a concert coming up soon!) and for much of the rest of the day she played as she usually does at home - except her dolls and any adult she could rope into were now seated on an airplane! Kit too spent the day playing with his remote control helicopter that he got for his birthday as well as doing some craft (from kits that we got in London - we all had a go of that activity) and of course the dreaded DSi.I started on the miles of washing - and am hoping that that will be over soon. The kids room is back to normal with the few souvenirs they bought having found appropriate places. My room is a total disaster because I was too tired to finish putting everything away - plus there are the small gifts we brought back for family and the kids school friends lying about... maybe later today....

The Tower of London was my very favourite tourist attraction....I'd go every weekend if I could!Europe was wonderful. I loved it so much! It was great getting around with just the four of us. In fact I might even miss Phil who goes back to work today. We have not really travelled much - Greece about 20 years ago and Malaysia and NZ before the twins... WOW! I wished we had done it sooner - just so we could have seen even more of it - not because I want to change what we did this time around. I knew I'd love it but I didn't really expect that I would learn so much or gain some of the perspective about my own home country that I did. We are keen to go again but it is going to take some time and determination - it is so very far and so very expensive.

Hannah's Hamleys Loot

Kit and the Kaboom from Hamleys in Kensington GardensParis was my absolute favourite. I don't know why. I wanted to go but didn't really have much of an idea about the reality of the city before I left. Oh the lifestyle, the shopping, the fromageries, markets, butchers, boulangers! It had something very special to offer that I can't quite put my finger on. If I could learn the language and return - I would in an instant. I was saying to Phil last night that from now on I am going to be buying tickets in any raffle I see with an O/S trip as the prize. Everywhere else was brilliant too with perhaps Roma being our least favourite but I am not holding that against the city - I think it was more the fact that we went there last and although where we stayed was good - it was right in the middle of the tourist drag and lacked the 'personality' of our other digs... not at all Roma's fault!

Hannah's French look

What Hannah wore to visit Buckingham Palace. This is in St James gardens.I think Hannah's favourite touristy things were climbing (in the elevator) the Eiffel Tower and the gondola ride in Venezia. Food wise there is NO WAY that girl would go past Italy - pizza, pasta and loads of limone gelato. I can still see her blissful face as at one trattoria in Florence (which we returned to to eat at again) she tucked into a bowl of spaghetti and cheese - her true comfort food. She was almost falling asleep in her plate with the relaxation of it. She later moved on to demanding 'pasta and prawns' at almost every other meal! Kit loved our stay in Oxford where we caught up with friends from home a few times so he got to play with their little girl a bit plus Blenheim Castle was magnificant with fantastic play areas including a hedge maze. He also liked Hamleys in London (of course) and the gondola ride and our time in Florence - the food was superb. Oxford Photos:

The view from our Paris apartment - the best place to watch ratatouille over and overKit and I have been wanting to visit Giverny since he was about 3 - we were not disappointed...

Italia

As anticipated the twins turned 7 in Florence - and I think Kit will remember it for a long time as the birthday where he got to eat gelato four times! Yes party Dad was well and truly out to make sure that the kids (and I - given that my b'day is the day after theirs) had a great and memorable birthday.Now I have about 2 000 photos to wade through to try and put into some sort of order so we can torture our friends and ourselves with them for years to come...lucky I don't return to work for another week.

I am hoping the link at the top works - the wonderful Jill from NSW DSA - who looks after their great blog Keeping Up With DS - posted up 3 of my 'postcards' sent via Hannah's ipad on our journey - so if you are interested in how we managed to gad about three countries in four weeks with two six/seven year olds - one of whom has DS - please go and have a look at the blog posts you'll find there.... you can use the link - if it works - otherwise it may require the dedication to Dr google.... http://keepingupwithds.blogspot.com/2011/10/postcards-from-europe-3-italy.html

So did Hannah having DS change our holiday at all? Hmm - that is actually a hard question because in essence no it didn't - we live our lives accommodating Hannah ( and some of that obviously means adjusting for some of her needs which result from the fact she has DS - like using sign to communicate or watching her safety at activities where gross motor skills are required more closely due to her low tone) ... and in other ways of course it impacted upon our holiday schedule just as the fact that Kit is 6/7 did also. The main thing was just trying to tune into how much she understood of where we were going, what we were doing and when we'd be home - because like most of us feel more tired by new situations - so does Hannah, but it can be more obvious and perhaps have a greater impact if she has to 'cope' with unknown changes quickly because we didn't explain it clearly beforehand. For example - she was so excited to be returning home (as we all were) but did she get that it was an incredibly loooooong flight involving lots of queues and changing planes etc?The other area where her having DS was obvious was in gross motor activities. There are stairs, stairs, stairs and more stairs and then some more stairs and steep slippery marble stairs and still more narrow windy middle ages kind of stairs than we have ever seen in our lives in ALL of the places we went! And Hannah coped liked the trooper she is - but as the holiday progressed - her 'I'm tired' became more frequent and it also meant that after a couple of weeks Dad's shoulders alone were not enough - so Phil and I also took turns at carrying her part of the way as we went around galleries and walked about towns.

Each day - when planning what to do we always had to consider how far things were. Kit also got quite tired sometimes but by far this was an issue for Hannah. Usually we dealt with it in a very pleasant way - we (or one of us) stayed with the kids and did craft or watched them prepare a 'concert' or did some drawing with them... all very pleasant and relaxing activities. It also meant that I had to be more forthcoming than I'd naturally want to be. I would walk up to the staff at each gallery or tourist place where there was a long queue clasping Hannah's hand and asking if they had any facilities for disabled children. It always made me feel a bit uncomfortable and I never did work out exactly the phrasing I was comfortable with but the only place where they were quite indifferent was at the Louvre (so not my favourite gallery to visit - and not only for that reason). Every other place was incredibly helpful and understanding - at the Musee D'Orsay (my very favourite gallery) I didn't have to even go up cap in hand looking for a favour - the guard noticed I had 2 children and simply told me to get Phil (who was in the long queue) and go line up at the shorter queue - to the Palais Del Vecchio where as soon as I asked if we could use the lift to go up - the guard escorted us over with a big smile - or the Uffizi (another fave) where I did the asking - and the guard/officer not only lead us straight in (avoiding an hour wait) but gave us complimentary tickets as well. We didn't see as much as we might have without the kids but we did see more than we thought we would with them. And ultimately what made it a spectacular holiday - one we'll talk about for years to come was not only what we saw - but that we went and we went together and we spent our time as a family in some very special places in the world. SO I have to say it wasn't easy but it was easier than I expected and I also need to add that it was even better than I had expected - and I'd had high expectations before we left!

Ok - jet lag moment passing - so might have to post more pics later on...

G'day .... See Ya!

2011-09-19T21:46:00.000-07:00

Well, well.... It is hard to believe it but Sept is nearly over. Spring has well and truly sprung - it is my favourite time of the year and I find myself almost regretting that on the weekend the whole family will be jetting off to the other side of the world where it is autumn. Only 'almost' as of course I am absolutely beside myself with excitement about our very own European Vacation.On Saturday it will be Phil's and my 17th wedding anniversary - and if Mum was still alive it would be her and Dad's 50th wedding anniversary. One of my other sisters is also celebrating her wedding anniversary on that date - but don't ask me the exact length of her marriage - at least 22 years cos her eldest turned 21 this year! Things have been busy here preparing for the holiday, coping with the busy cycle of work that is teaching/exams/marking/reports and helping out as much as we can with the school's first fete in 7 years - and the big fundraiser for our P&F. Finally I am at the point where I only have one day of actual teaching and one day of work with supervisions to do. So time to take stock of where we are up to and what has been happening so far in the Dock....My beautiful mother. Fancy this photo was taken almost 50 years ago... she has been gone for 3 years and we still miss her so much.

School had a minimasterchefs competition as a fundraiser - here is Kit's contribution-

Hannah did a great job joining in with the Year 1 concert at the school fete. You can't see Kit in this pic as he was on the other side of the stage - also doing a great job.

The fete was lots of fun, the kids had an absolute blast. Some time earlier this term Hannah's best friend left school - she is being home schooled. At various times I have asked Hannah if she misses her and she usually just says no - and that Gen is at home for school now. Still, when I ask her who she played with she sometimes says Gen's name - and if I ask her about it she'll say 'just pretend Mum' or when we were away at The Shack and she was drawing she drew 3 people and she wrote her own name and Mum above 2 of the people and asked me to write Gen above the third. The day before the fete I got a call from Gen's Mum to see if Hannah would be at the fete. Gen had been pestering her all week to organise so that the girls could meet and play together there. When I went and got Hannah from after school care I told her all about it. I have not seen her quite so excited before - as soon as we got home she was in her bedroom dressing up and chattering and squealing with delight. It was lovely to see but also made me feel a bit sad as it showed just how much she really is missing her friend.The next day, the day of the fete, I dropped Phil and Kit at the fete and took Hannah to her dance class - she cried and wanted to go with Daddy to 'see Gen now!'. I had to explain that Gen would be there later on in the morning. Needless to say the fete was a great day for her because she got to play with her friend for ages...One of Hannah's favourite pretend games is to be a mermaid - so I had to snap up this bargain costume at the fete. She wouldn't let me tak her photo until she had some lipstick on...hmmn Still she looks great in it and has worn it many times since already.

She is also now sporting a new bob - but you will have to wait to see that in our holiday snaps... we are going to London, Oxford, Paris, Venice, Florence (what a great place to turn 7 in!) and Rome. So excited! We are also very lucky in that my Dad and various relatives will be staying in the Dock keeping the dog walked and the garden watered...Ciao!

Holidays and Travel

2011-09-06T06:54:00.000-07:00

Kit made some boats out of quilts for he and Hannah to row...
Neil Diamonds Lyrics for The Boat that I Row say so much about our life here int he Dock and my hoeps and dreams for Kit and Hannah:
I don't have a lot, but with me that's fine
Whatever I got, well, I know it's mine
I don't go around with the local crowd
I don't dig what's in so I guess I'm out
I'm saying these things
So you know me, baby
So, you understand what I'm all about

The boat that I row won't cross no ocean
The boat that I row won't get me there soon
But I got the love and if you got the notion
The boat that I row's big enough for two
Just me and you

There ain't a man alive
Can tell me what to say
I choose my own side and I like it that way
I don't worry about all the things that I'm not
There's only one thing that I want I ain't got
You know that I'm talkin' about you, baby
But you better know before you come along

The boat that I row won't cross no ocean
The boat that I row won't get me there soon
But I got the love and if you got the notion
The boat that I row's big enough for two
Just me and you
(instrumental)
I'm saying these things
So you know me, baby
Do you understand what I'm all about
The boat that I row won't cross no ocean
The boat that I row won't get me there soon
But I got the love and if you got the notion
The boat that I row's big enough for two
Just me and you

The boat that I row won't cross no ocean
The boat that I row won't get me there soon
But I got the love and if you got the notion
The boat that I row's big enough for two
The twins love having a shower at the pool after their swimming lessons.
School had a mini-masterchefs competition - so of course Kit wanted to enter. He made chocolate bombs with marshmallow with minimal help from me...
A friend organised for 4 families (all with 1 child with DS) to go away for the weekend to the Shack. We had a great time! The kids got on really well together and there seemed to be a good mix between them. As we sat around on Sat night sharing a bbq I loved how the weekend was just like other we have been on - with families from school or old friends...that is that even though we were away as a group of people who have a the fact of having a child with a disability as the thing we have in common - our weekend away was so very 'normal'. We wished it had been just one night longer - but came home feeling truly relaxed having got away from it all... and the kids had had a blast - they were so busy with their various activities:
Hannah's digs at The Shack
Two very gorgeous girls sharing a drink for breakfast
Hannah wasn't the only one who enjoyed some drawing and writing time

Scooters were a big hit on the weekend

One of the girls who came away with us just loves handball. The brats loved the idea of it - especially Kit. I will have to get them a couple of balls so they can play it at home.
In the afternoon we walked to the beach. It was pretty windy but that didn't stop the twins from having a blast playing in the sand an the sea.
listening for the sea in a shell she found

Dancing in the kitchen
All the kids had a swing
Hannah set up a bus. It was to take the passengers to the icecream shop and the zoo
Phil loved playing guitar while Sophie sang From Little THings Big Things Grow... a number of the other kids there danced while they sang and played
It was late to bed on Sat night for all but 2 of the children with us...
The twins loved giving Phil the gifts they got from the Fathers Day Stall at school
Packing the car for the return trip
We left Shoalhaven Heads a bit earlier than we would have liked - to be back in Sydney fro a family Father's Day picnic. Worth it though as it was a lovely way to finish off our weekend.

Mr Whippy. I had one too - my first in years...and boy oh boy... it was GOOD!
Hannah and her father patiently waiting for the papasan swing at Livvi's allabilities playground to become available...
Hannah just adores her cousins, not least this little one who has recently started walking.
Now to hope that our holiday to Europe is just as 'normal' whatever that might mean when you are travelling so far with 2 6 year olds....

What have we been doing?

2011-08-30T03:19:00.001-07:00

One of Hannah's BEST friends (she has 2 - a boy and a girl) left school. Her Mum is going to homeschool her kids. I have been talking about it with Hannah - and we got her this lovely pendant (engraved) as a farewell present. I also asked the school to put some photos of the girls on Hannah's ipad - as while she knows where her friend has gone I am not sure how she will feel about it when it sinks in that this is a permanent change. Gen has been a wonderful friend to Hannah. Hannah has LOVED having her in her life. Now I can only hope that the girls will still see each other around in the community and perhaps go to school together (maybe highschool??) at the very least I know that this little girl was the first 'best friend' Hannah ever had - and when she came home so excited from Kindy to tell me that Gen was her best friend - I cried. She was so proud and happy and in love. I hope she gets that sort of friendship again - I'm sure she will. The little boy who was part of the trio has continued to be a wonderful best friend for her.
Hannah is happy that she finally got her big Lalaloopsy doll - she LOVES the button eyes (thanks to Coraline)
Kit has discovered and loves the Tashi books

Hannah's friends and teachers aid spent a little time playing with the camera on her ipad
Hannah's drawing of her speechie done on an ipad during a ST session.
Hannah got dressed up for the soccer BBQ
Soccer season is done for another yea - we had a lovely end of season BBQ at a friend's place.
Dad sent us a care package from his holidays in SA - a stack of Haighs chocolate (divine!) and some lovely Mary MacKillop souvenirs - our first Aussie Saint for those that haven't heard of her before.
Kit chose these make 'em yourself speakers for our resident hi-fi geek.
The night before 'the birthday' I realised that I still hadn't taken hannah shopping for a present for her father - she had said all along she wanted something from the toy shop. So after I picked the kids up from after school care I raced them to the 'geek' shop near us - full of scifi and fantasy things and anime goodies etc...She decided on a bey blade for him (which was preferable to me over the fluffy angry birds toy she had been contemplating). I am standing with her trying to hurry her decision - we still had to get home and cook the night's meal after all. What about this nice blue one? I ask - and proceeded to offer her a few different colour choices - I can tell you I felt both very silly and very proud when she finally picked one up and said this one - Pegasus for my Dad. Yep she wasn't going by colour - only ignorant me was!
The morning of 'the birthday' was one of my days off - so before I went and helped at the kids school I had a cuppa with one of the Mums - and totally by accident - see our order number? I had to take that photo to show Phil - it was very appropriate.
Kit's dessert for Phil's birthday
Birthday celebrations - Kit and I cooked a three course meal and Hannah decorated a cake. Kit sang happy birthday in Italian and we all sang the English version.
A professional photographer was coming to Hannah's dance class - to take pics for the end of year concert - so a new outfit was in order - this is a variation on the one she chose to wear on the day.
I have been feeling so overwhelmed lately with everything that needs to be done - and I so often feel that i am behind in keeping up with things. Phil kept reminding me to find out when Kit's music concert was - in case it is on when we are O/S next month... so I asked his teacher - only to find out that it was the next day!!!!! So lucky that we had nothing on the next day and so could go. It did make me wonder why I always seem to feel a bit harried when when it came down' to it - I was free! The same thing happened again today when i realised that I had got my dates mixed up and we were meant to be meeting with friends this weekend not next as I had been thinking... no problem though - we don't even have to reschedule stuff - just squeeze it all in.
Charlie and Lola are still HUGE. The twins love acting out the parts and when Kit isn't available Hannah gets her father to step in - sometimes as Charlie and other times as Lola.
Costume for Ballet - must be worn when watching Barbie and the 12 Dancing Princesses

Ah the journeys she'll take you on....

2011-08-14T23:08:00.000-07:00

Today I am reminded of just how wonderful and crazy this parenting journey can be. I am not a shy person but I don't think I'm particularly gregarious either... my friends are usually more outgoing and 'stylish' sort of women - they are at ease in leadership roles. I was so proud of one of my friends who recently was interviewed on a national radio show talking about how best to engage children in education. She did great - and I was very proud of her.
Then I heard that Stella Young a disability advocate was going to be on an Aust current affairs show called Q&A. Eagerly I looked at the site wanting to see what questions she'd get. There were heaps on the proposed carbon tax... but only a couple on the proposed NDIS (National Disability Scheme). Now I love Q&A and I know that the carbon tax is important but this is a weekly show and a lot of it's time seems to end up being taken with a merrygoround of factional political parties arguing about climate change. I felt that if I wanted to watch a fantastic episode where Stella could strut her stuff - maybe I'd have to participate too. There is noone to hide behind. Noone I could jostle in front... but what to ask... there are so many things about disability that I want to lobby about. And so I finally put fingers to keyboard and drafted a question - based around the issue of how social structures and some professionals seem to baulk at the idea that they should be the ones to change - rather Hannah should be made to 'fit in'. It is a topic near to my heart.
Still I nearly had a heart attack when I got an email today saying my q had been shortlisted - and could I send in a video of it if possible? Well then I really nearly did have a heart attack. I quickly replied, with my heart pounding, that I was too chicken to be videoed but I hoped that they might still be able to use my question or one similar.... Then I rang my husband. He was very encouraging. I bit the bullet and videoed my question. With my heart absolutely clenched tight I submitted it. Then I got 2 more calls this afternoon to clarify who I was and where I live and if I belonged to any political parties etc... my video is on the short list for tonight. National tv. My heart is in my mouth... who would have thought it? If I had have had 2 regular kids I might have been quietly eating my way through a bowl of icecream and milo and listening to some other special needs mama put her heart on her sleeve - yet again - for the wondrous joy that her child brings her. Spreading the word, raising issues, making sure she is seen and HEARD.
Wish me luck. I truly am terrified. What a ride!
Ferragosto time in 'little Italy' so we all walked around to the main drag to see what was happening.

captivated
These little guys had Hannah enthralled for ages. They splashed through the water - a couple tried to swim in the little bowl and in between they'd go and nibble at the bunnies at the back of the enclosure. Very sweet - I almost wished we had a pond in our back yard!
My gorgeous boy
I bought a dolly's tutu - which Hannah was keen to put on one of her many dolls - and then she gave her a dancing class.

Kit took to writing songs for some reason recently. here is one of them - the first I think? Anyway - he recorded about 8 tracks on the Mac using some software of his father's - and now the bug has passed cos he and Hannah have been too busy acting out the parts of Charlie and Lola as they watch them on dvd.
The cooking fascination continues however - Phil and he blanched tomatoes for a sauce to serve with scallops for dinner last night and he made us a jelly with praline crumble for dessert.

Craft and cooking Bugs

2011-08-06T23:48:00.001-07:00

Disaster nearly struck when Kit started correcting the mistakes he'd made in his recipe book from a year or so ago. Lucky Phil was able to photograph some of them so all is not lost. Kit thought me very strange to want to keep those lovely little boy spelling mistakes and letter formations for posterity.
Eggs
Hannah's Fashions
Lego is a great fine motor activity for Hannah at the moment I just wish they made more kits in girly colours - it was slim pickings when she and I went to buy some - so we ended up with Lego City police van.
Hannah and I made up a new lego model
Kit's first praline - nut free.
Kit's dessert
Hannah's snap of Kit and I plating up.
How Hannah sees me.
Cosy
I may have mentioned that one of Hannah's favourite songs is Daughter by Louden Wainright. She dons a towel and pretends to be a mermaid. Phil has a part to play and has to sing along and point at her 'swimming' when the line "That's my daughter in the water.." comes on.
A simple craft collage was a great way to end our day. Hannah and I sat and cut and pasted and chatted happily for ages on this one.
Hannah wrote Mum and Hannah at the top of her creation and then in similar style but using what she describes as her 'baby writing' (ie scribble lines) she tells me she also wrote Kit and Dad.
Kit caved when he saw exactly what Hannah and I were doing and how much fun we were having. I love it when he voluntarily turns off the technological devices.
I enjoy watching these two working or playing side by side - it happens less often as they get older.
Thinking
Hannah made an elaborate craft collage of a ballet concert and stuck it on her bedroom wall. [Phil says I am too old to stick my craft on the bedroom wall and that anyways Hannah's is a bit better than mine but I say a man who was out on Thurs evening at a trivia night and who went out again on Sat night to watch NZ flog us in the rugby should keep some opinions to himself!]
Kit made crumbed chicken drumsticks and soy sauce with buttered zucchini for dinner.
Little brat sat and read one of her favourite books while the dinner was cooking.
While he was waiting for the chicken and the rice to cook he started to draw up a plan for how to 'plate up' his dish, and then the weirdo got out the colouring pencils as well!

Voila!
We've recently moved from eating at the tall kitchen bench on bar stools to a borrowed dining table. I love it. This morning I made us french toast with orange butter while Phil slept in.
Look what our neighbours delivered warm from the oven this morning - an Egyptian dessert. Yet another reason to enjoy diversity in our society.

Technology

2011-07-26T05:14:00.000-07:00

I was reading tonight about ipads. A number of kids with special needs have been getting funding for ipads. They are an amazing asset to the life of people with disabilities - especially when used constructively to enhance living and learning for the individual.

It made me think of this:

Our family thought the TTY or telephone typewriter was fantastic. Suddenly my sister who is profoundly deaf could phone a friend - so long as they too had a tty. The technology must have had teething issues cos I recall her tantrums and banging it on the bench when it didn't work. Still it turned out to be just the edge of it all.

If I go back even further of course there was her hearing aids. First int he 1960s the ones with a sound box that you slung around your neck, then later on the ones where the battery nestled behind the ear - and whistled driving us and its wearer crazy. I remember my sister's annoyance and embarassment about it. Still she looked pretty young and cute if I look back at our childhood photos.

Then in her mid 20s she got married. The house she and her husband (who is also hearing impaired) bought had a doorbell that was rigged up to a light - so it flashed when someone rang the bell. Ingenious we all thought. Not long after my sister had her first child - and a battery that vibrated and resembled a plastic tampon was set up - again attached to a lamp. You popped the tampon like piece under your pillow and voila - if the infant woke up crying - it started to vibrate so that you woke up too. Ingenius really but still not a patch on what was to come.

The first mobile phones were clunky and large. My sister was living her life with her husband and kids in QLD by this time so I can't recall when she got her first mobile phone - but the vibrating and texting opened up a whole new world for her - it made social engagements so much easier. We didn't have to rely on the National Relay Service all the time but could text freely - anything from important news if someone was ill to celebratory messages such as birthdays and so on.

Then the 90s came and with them the internet and email. Wonderful stuff. My sister would email Mum every day at least once often more. My sister loved ICQ (?) an early online chat site. And then less than 10 years ago comes facebook. Now my sister is very much part of the deaf community. Her culture is a deaf one. In many ways she grew up an alien in the hearing world. It wasn't easy but as I have said before she is a strong and capable and wonderful person and she managed. The impact of some of these things were though that her literacy and ability to read social cues (tones etc) was not as strong. As an adult if she had an important letter or email to send she'd get Mum or one of us to proofread and edit it for her. Computer technology has had a significant impact upon this.

My sister becomes a Granny!

My sister has never really been that involved with current affairs for example - she has felt excluded from it - even though our family loves a good political debate - she was excluded by language - she isn't comfortable reading a lot including newspapers and closed caption news is relatively new. She found out about events through the word of sign in the community and from her family. So more material was 'filtered' for her, ie she was exposed to less variety than many hearing people might be.

I noticed this more specifically just this week on facebook. My sister has a slapstick ribald sense of humour and posts things on fb that amuse her and her family. She also posts material about the deaf community such as the current campaign to nominate Auslan as primary language when the governemnt census takes place next week. She has shared a couple of my links related to disability and down syndrome. She is able to participate in social nuances in a way that I think she has been excluded from in the past. So this week she posted a link which I did not get to see. She must have taken it down but my husband told me as soon as I got home from work that he had commented on her link because he thought that it was racist. He told me straight away because I guess he was worried he'd offended her but at the same time had felt he needed to express his viewpoint. He said that a couple of her friends had already picked her up on it. And so the post was gone when I went to see what the fuss was about. And it made me think about some of the benefits of technology in helping improve our cultural literacy. Understanding the social mores and nuances is important to our sense of belonging - of not being alien. My sister at nearly 50 is learning some of these subtle things hopefully in an inclusive and positive way via the technology. She is adjusting her boundaries and expanding her world view -as we all are but in her cae I feel that it is actually a totally new experience whereas for many of us it is simply an extension of precomputer/fb communications. Amazing huh?

Before the twins were born in 2004 we had a bulky pc upstairs in our attic and dial up internet. It meant that outside of work I rarely checked the internet or emailed anyone. It must have driven my Mum crazy cos she and my sisters all communicated regularly using email but I was more recalcitrant. For Mum it was a way to keep in touch with us all - with her daughter who lived nearby but because of her deafness couldn't just ring up daily like hearing kids could and to keep in touch with me - her 'baby' who lived 1000 kms away. She used to love talking about megabytes and jpegs and even did a course at Gympie TAFE. I used to put her on to Phil for that sort of talk - it was beyond my understanding. Phil got his first mobile phone that year too -(I got mine a bit before i fell pregnant). We also bought our first digital camera when I was pregnant - and you can see from this blog how much I LOVE that piece of technology. That year we bought a laptop with wireless connection.

With my thousands of photos of the twins on screensaver slideshow there was a time at our old house when those brats would be meant to be eating their meal but instead their eyes would be drawn to the laptop on the kitchen table - and the passing images of themselves! It got tot he point where i thought I might be creating two painfully vain beauty pageant kids so I used to make sure it was turned off at mealtimes!!

I can't recall exactly when it happened but it was totally by chance that one day I decided to google DS. From there I found a wonderful and amazing group of moms (literally - they were all US) who blogged about their experiences. Many of these are the women who also so generously shared their parenting experiences in the wonderful Gifts 1 book. Bits of Betsy was one of my favourites - that woman can write! One of the first of her posts that I fell in love with and still adore was a short 'medical' hitlist definition of what it means to have DS followed by her own personal description based on her daughter - the beauty of brushfield spots etc. Michelle at Blueberry Eyes featured largely then too - I had no concept of life for a military wife let alone a military brat - and her daughter truly did have the most amazing blueberry eyes - they were stunning. Then there was the 'hub' Always Chaos around here. Rebecca was a stalwart - an example of an organic hub for lots of blogs and many news items relevant to DS. I still miss reading what she and her beautiful Miss E are up to. Occassionally I stumble upon them in this virtual town and it always makes me glad to see how well they are looking. There are others as the list grew such as Jan with the so sweet Nate, the delightful Bradys Bunch and how could anyone not return to read how Emma Sage and her Mom were going? So for me I found connections and learned about other perspectives through this format. My cultural and social literacy was enriched. These days the always uptodate and user friendly NSW DSA blog is the one I check almost daily.

On April 6 2006 I began Shamptons. My online private/public life. It is my online journal. My pass to participate in blogland. And I love it. It is a place to sort out my feelings, to share our fun. One day I hope the twins will read it - it has become my gift to them. A chronicle of their childhood. So many events are recorded here. I look back on my post about Hannah's OHS and Kit getting meningitis and I can still feel some of that raw emotion. I sometimes think of editing that post now - of updating it with the gift of my current position and perspective but then I hesitate - those emotions were valid at the time and shaped the future and so I let them be. Like other posts too that I look back on... what is here reflects only that moment and not necessarily future moments at all. This little piece of the cyberworld helps keep me sane. It helps me to 'breathe'.

I joined a forum too - a US one - it is a big pond but I found it useful to go and browse through the posts. to learn the lay of the land there. Then one day I got a pm from an Aussie Mum - she was starting up a forum for us down under. I am so glad that Cas made that effort. DSDU has been like a family lounge room for me. It was where I could go to seek understanding and advice. Of course there have been some fights too - hopefully this forum will continue and go from strength to strength in bringing families together - for that way we are better able to lobby for our children and as these kids reach adulthood I am hopeful that such forums (or whatever the technology of the time will be) can be used by them to advocate for their own interests - supported by us and others.

Facebook has challenged the forum world though - DSDU is going through a bit of a lull - and fb is booming. I love the immediacy of fb. Unlike the forums it integrates elements of our worlds - so rather than discussing DS life as a separate thing when I am on fb I can include it for my relos and my friends as well as those who are part of the disability community. It is a more diverse medium. I can't be as personal on it necessarily - especially as some of my ex students are my friends on it!! For example one of my students from Kuwait volunteered at the Buddy Walk last year. She has a sister back home with DS. I thought that that was such a beautiful thing - I wished I had made it to see her but heavy rain had put us off so we didn't go in the end...still from fb I got to see her smiling and relaxed photographed with a child who has DS that I have met a couple of times through the DSAssociation - and that was a treat.

And here we are almost up to date. For his birthday last year Kit really wanted a DS. We knew Hannah would not necessarily be able to use a DS as well due to her language/reading level - so she got an ipod touch. Both brats were very happy. This year Hannah wants a DS and Kit an ipod touch - maybe we'll just get them to swap devices for 12 months!!

Then the ipad came out. Our SAS case manager helped us to write an application for funding to get one to assist Hannah. Her kindy teachers supported our application. They had been fantastic with Hannah and had seen how useful the smart board in the classroom was in enabling them to more accurately assess just what Hannah knew and they saw that she was very adept at using it on her own as well. So this year she started year 1 with an ipad. It has been a trial and error path. Some of that is due to her teacher - she is no doubt still getting her head around what the smart board can do let alone the ipad for Hannah. However slowly with encouragement from myself and the ST Hannah's aids are using it a little with her and the spec ed teacher too. It opens up so many opportunities for Hannah and I am certain that as we get more familiar with it, and the staff can access more professional development on its use and even more great apps become available...well it truly is a brave new world isn't it?
One of the 'creations' Hannah has made with her ST on the ipad

My dream of modern classrooms - revolutionary places where the focus is on the child and not the teacher - where the learning environment is better able to meet the individual needs of kids like Hannah as well as the very brightest of kids is perhaps not so very far away. Of course there is always the human factor but the ability to differentiate work and to work collaboratively would be wonderful things for teachers to be able to do. In my own classroom I am very aware of how hard this can be but I am also aware of how rewarding it is when it happens. It isn't that the fundamental purpose of education is necessarily changing - it is simply that we can and should be always looking to make it better.

Back to school

2011-07-25T19:27:00.001-07:00

I bought some tulips to decorate the house for the weekend. I was organising them in vases while the kids were eating dinner - it was only after I realised that I had a photo of my own journey to Holland with a face smeared with that Italian classic dish: spaghetti bolognese. I liked the idea so here is the pic-

On Friday night both kids decided to read a book while waiting for Masterchef to start. Hannah LOVES Mouse Mess.

On Saturday Hannah was keen for a game of soccer but first she insisted on writing 1 on her shirt...
Phil and I have met many wonderful families through the twins starting school. On saturday we had the parents from our weekend away over for a curry night, plus a couple of extras. Everyone had nominated their idea of the best and worst song of the 80s. We had an absolute blast. These are a great bunch of friends and I feel so lucky to get to know them.
Hannah loves the idea of mermaids at the moment so here she is on Sunday morning cutting and pasting a mermaid picture.
Hannah's ipad has this great app called Pictello which I use for her to show her aid each week. I put a couple of pics of what she's been doing and then we record a conversation about it - so it gives Hannah a bit of speech practice too. Kit made pasta from scratch all by himself. It is something he really wanted to do and was so proud of himself for doing so - and we had a pasta feast for dinner. I took a sequence of pics of the process and he made a story on Pictello too. Gotta love the ipad technology
The term has begun here. Both kids and I were pleased to get back into routine although we had also had a good break. We made sure we enjoyed our weekend when it came - we needed the rest.

Holidays are over

2011-07-19T04:34:00.000-07:00

One of Kit and Hannah's old friends from school came over for the day - both kids LOVED having her visit. They had a great day. They used the play doh, jumped on the trampoline, did some paintings and decorated cupcakes and played snakes and ladders... thanks to their parents who entrusted their gorgeous girl to our care....It was interesting watching her stand up to Kit on Hannah's behalf - she is such a bright one and more than gives my loveable but bossy Kit a run for his money... no wonder she is the one I'd like him to marry - yet he does not agree! Clearly she is much too 'equal' for that!
On the weekend Phil did some gardening with a little 'help' from Hannah and a tiny effort from Kit - when he could tear himself away from his pokemon games...and they planted our lemon tree!
My friend's 'puppy' (she's 2) who came and stayed with us for a few days...she was a delight - a lovely nature.
Hannah is such a loving child. She is so well liked by her peers (who are just fantastic) but aside from her two best friends at school - it is still easier for her with slightly older kids - like her buddies at school or molly her lovely cousin...Hannah was so excited to be sharing a bed with Molly - and Molly read her her favourite book Mouse Mess - something that Hannah was very keen on repeating the second night her cousins stayed with us too.... the dog looks pretty happy with the two girls as well.
My niece who is 10 and the second of 4 got to be the adored eldest when she and her little brother (who is the same age as the twins) came to stay for a couple of nights. My guys were in love...
My gorgeous nephew turned 12. Who woulda thought? He's a great kid and a beautiful young man in the making....
Masterchef still reigns supreme here. One of the things I found most difficult in the holidays was that I couldn't nip up t the shops for groceries - I had to drag the twins with me. It doesn't feel right dragging them around supermarkets... still we need to eat! So on payday we did as much of a 'big shop' as I could make them endure... and Kit was totally engaged by grabbing a recipe card at the entrance for his favourite show - a recipe that we then made together that night....
On Thursday I totally forgot to take Hannah to Dancing HEarts - which she absolutely LOVES - I did however remember to take both brats to the park to catch up with my girlfriend and her daughter.

Hannah's favourite piece of equipment in a park full of stuff she LOVES
Kit and my goddaughter enjoy a cuppa (just like a couple of old ladies... or should I say their 'dear olde Mums' lol.
For reasons that I wish I could say I have NO knowledge of, Hannah was quite taken with the idea of a wedding - and in fact played this game for ages a few times in the holidays - the event for her seemed to require flowers and a ring. She didn't seem too fussed about who she married but she did want her family there. {ok. I confess.... it's terrible.... but one of my fave apps - and one Hannah shares with one of her friends each Thursday while their twin brothers are at chess club - is the app Will and Kate - it is a FANTASTIC story - lovely interactive features... you guessed it ... all about the Royal Wedding... Oh the offences this good feminist mother is committing against her poor defenceless, intellectually disabled daughter... I can hardly bear thinking about it except that it was such a wonderful part of my own childhood (thanks Mum!) and I still turned out independent enough to call myself a feminist and keep my name when I got married!) Besides - it is such a great app - you get to dress the bride, hear them say "I Do" watch a sheep chomp on some flowers and hear the 'ker-CHING! when the ring box opens to reveal it's loot.}
Hannah with her bridal bouquet.

I got to go and watch Kit play soccer for the first time this season - because Hannah's dance doesn't start back until next week.
THey still have oranges at half time but boyo - the quantity these kids consumed has at least doubled since last year!
Hannah wasn't so keen on watching the game. I think she found seeing all those boys she knows from school a bit overwhelming after a 2 week break.
the only downside of our holiday was when the mum of Hannah's best girlfriend rang to let me know that she will be taking her daughter out of school in a few weeks time to homeschool her. Hannah loves this little girl and she is just fantastic with little brat... she, Hannah and the effervescent Zachary are a wonderful trio of friendship that has really helped Hannah this year... I hope that they will be able to maintain some level of contact but will have to wait and see... I am grateful that G's Mum rang so I have time to try and work out how to explain it to Hannah. And now... onto term 3 - baby we are half way through Year1!

Holidays begun

2011-07-04T09:32:00.001-07:00

Well this little spot about 2 hours out of Sydney is where our holidays began. A family from school invited us and some other families down for the weekend. The house belongs to the grandparents of one of the twin's friends and they were away so we all moved in. Nestled in the forest with ocean views in the distance and a log fire burning - it was a touch of paradise. The best thing though was the company. We all had a blast. What a great way to start our 'at home' cooking and cleaning holidays! We have met some wonderful and generous people at the twin's school. And here is yet another example of their great spirit and fun...
13 kids. 11 under 7 and only 3 girls - so the dinosaur video was on more than the girls would have liked...lol

Hannah spent a lot of time drawing and writing - the other kids joined her intermittently
Dancing to Abba
Another bush walk

Jumping Jack
Ninja time
sweet

At the country fair - it isn't a holiday if Hannah doesn't swing!
Kit thought car surfing on the property was great. Hannah was very keen to tell me that she had ridden in the boot to get up to the walking track - yes how else do 5 Dads get 13 kids in one vehicle to the spot for a bushwalk? (SO glad I wasn't aware until the Mum's returned from the local beauty spa - by which time it was all done and everyone was very happy after a successful outing)
Volleyball game

Kit ran wild with the pack. I hardly saw him except when we drove into town and he was in the car with us and this rare moment when I caught him for a shot cos he was feeling a bit sad over some wee problem between the kids - oh yes - and when he came back from a walk in the rainforest with a leach on him!
The road to the property

Fish and chips by the sea
Collecting shells
and making sand castles in winter
Four free spirits
Four raucous boys on the trampoline
It was only a weekend but we all feel like we had a longer break it was such fun.

Pop is 73

2011-06-27T01:37:00.000-07:00

Kit's soccer team had a bbq - poor old Hannah - aside form one younger girl (not yet at school) she was the only female - and the testosterone was through the roof!! It was wild... lucky she has good self preservation skills and played on her own very happily for a lot of the time - especially good since that freed Phil and I up to relax and enjoy the great food and company of the other parents. We had a lovely time - and then that night we went out for a 'grown up' dinner with a couple of old friends while the grandparents babysat for us.

The kids all had a blast. Drawing and playing together. Nan and Pop made a lovely curry lunch which we all enjoyed and one of my SILs did a great chocolate cake too
The back stairs are a great place to launch a paper plane from

Meanwhile Grandpa seems to be enjoying his roadtrip - and sent the twins a postcard each and these tshirts.

Humour

2011-06-21T04:18:00.000-07:00

Beth's Hannah from Hannah's shenanagins (sp) tells some great jokes - ones that Kit would love too - he was telling me a knock knock joke this week - let me see if I can recall it... Why is 6 scared? Cos 7 "8" 9 - and then he cracked up laughing. The knock knock was something about Boo Hoo I think.... then this morning as I was munching on my toast and jam with a nice long black - and not just any toast and jam either - a beautiful slice of miche loaf from the gourmet Sonoma Bakery and some homemade blood orange marmalade - and I was just in the 'zone' where it was morning bliss before the mad rush out the door to school... Hannah is sitting next to me with her bowl of cereal. She commands me to close my eyes. "No peeking Mummy" she says - and then the little bugger swipes the prized last piece of my breakfast. And she eats slowly - so not only did I have to keep my eyes 'closed' for ages I didn't get my full brekky and didn't finish reading my newspaper either.
I helped in her class today and the spelling words for the week were sn ones - I relished explaining to her what 'sneak' meant.

The good life

2011-06-20T06:35:00.000-07:00

saffron milkcaps
As part of the schools enrichment program Kit took part in a knight and castle day
While I was relaxing at Solar Springs Dad and Phil took the brats to the park

Hannah chose pink carnations for the bedrooms
Buying a present for C's party meant buying something for Hannah too - she chose an umbrella - cos they have been 'singin' in the rain' at her spec needs dance class
Hannah and her best friend at one of her good friend's birthday parties - this little boy is just gorgeous - and then Kit sat with him at the tigers game the next day.

Hannah and I made a rainbow cake with playdoh
The boys went to Kit's first Tigers game... and Hannah and I had a mother daughter date - we did some butterfly craft - used the wonderful Pictello app to put together a story of her weekend for her teachers aid, ate chips and watched the Princess and the Frog...
Hannah and I enjoyed a gelato at my favourite pasticceria

Somewhere to start

2011-06-13T00:50:00.001-07:00

Well - the photos seem to have absconded from iphoto... Hannah had some weird files open earlier today... hmmm.

I went to Solar Springs in Bundanoon for a Mothers retreat with NSW DSA - it was fantastic!! to have all that head space just for me. Such a treat. On the Thursday before leaving I was walking by Gleebooks - so I wandered in hoping to get a copy of the novel Water Under Water by Peter Rix (it was being launched on the following Sunday) and I got lucky - it was there - so I promptly bought a copy and in snatched moments of my students graduation ceremony I began to read it. I finished it while I was away - and when one of my frineds asked me what I though of it - I had no words - I am still not sure - but i am mulling it over and will reflect upon it more a bit later. If you haven't heard about it - it is the story of a family, in particular a father and son - where the son has DS. It sort of reminded me of the Memory Keepers Daughter - only this time the father got to keep the child with DS. the writing style was a lot like Tim Winton (who is a GREAT Australian writer) although that was perhaps due to all the descriptions of water and the cover which was not unlike the cover to Winton's Breath. Being so close to the subject matter can make responding to the book as simply a novel very difficult - hence I am still thinking it over in the back of my mind.

One of the mums on Retreat has a 42 year old son - she has self published the comfortingly titled: Down Syndrome Where Do I Start? (Sigrid Kaly) - and I read it straight away too. I had been looking for stories about DS just before I left for the retreat - and had ordered a couple I found on the wonderful Book Depository UK site. Dear Dr Fields (Pat Daniels) arrived just before this weekend - so I am in the midst of reading it (well actually polished it off late last night while this post was in the to be continued folder). The young man in question is in his 30s now - and his mother retells their family story in the guise of letters to her obs who handled the delivery of a child with DS in Brisbane in the 70s very poorly. I was surprised to see that it was actually set in Australia as I hadn't heard anything about it here and had thought it was an english story.

While at Solar Springs I managed to get to a yoga class and go on an evening bushwalk to see the glow worms at GlowWorm Glen (is it only Aussies that have such imaginery names for places?). I pottered through the local village shops and foraged (successfully!) for some pine mushrooms along the roadside - also known as saffron milkcaps - they were delicious with pasta when I got home. Phil, my Dad and the kids had had a good time at home - we met them at the local park. Hannah was very excited to see me but Kit was much more laid back about the whole Mum going away thing, the big brat.

We have just had the long weekend and Dad and my AUnt from South Australia were in residence which was lovely. We all went out to the local Italian restaurant for dinner on Friday night. Yesterday some good friends came over - including the 'other' set of twins from Year 1 - so everyone had a blast playing together. We also finally made it to the travel agent to plan our European holiday - man holidays for 4 are expensive!! We are going to go to London, Oxford, Paris, somewhere near Paris for a quiet week - not sure where just yet!; Florence, Venice and Rome. Then home. Given the cost and limited time we have opted for direct flights there and back which are going to be hard on the twins - especially Hannah but I have asked for a little extra long service leave so will stay at home with her if need be to get her ready to return to school. I am very excited that I will be able to do some 'royal' things and Kit and I will be able to wander through Monet's garden - bliss.

Once I come out the other side of the marking abyss I will try and rectify the photo problem that prevents me showing you how lovely Solar Springs is and how much fun the kids had at the local park while I was away.

The Campaign Plan « everyaustraliancounts.com.au

2011-06-06T05:35:00.000-07:00

The Campaign Plan « everyaustraliancounts.com.au

Nonno's Farm

2011-05-15T05:37:00.001-07:00

We had a wonderful day today. One of the boys on Kit's soccer team invited his teammates and their families to his Nonno's farm. We all went - and had a blast...
The kids were imrpessed when the first thing they saw upon arrival was this piece of play equipment - from an old MacDonalds. Hannah was just as impressed as she had been with the car going on the boat - or the ferry we went on to get to the farm.

The kids picked oranges and lemons in Nonno's orchard.

There was plenty of machinery for the boys (and girls) to enjoy - including this motorised car. The Dad's were having as much fun as the kids as they took turns in taking kids around on the quadbike and the dune buggy. In fact it seemed to be as much a 'dad's party' as a kids one.
Quad Bike

I think she is ready to participate in the next Scrapheap Adventure that fundraises for NSW Down Syndrome Association.
Dune Buggy

Most of us went on a bush walk after lunch - up 'Shark Mountain and to a cliff face as well.
THe pinnata was a hit.
The kids were more than happy to make sure Hannah had a go too.
Here is the picture of the house that M's Nonno built - or carved out of rock and then built on top of. It truly was both amazing and fantastic. The farm had something for everyone! We had a great time.
The dinosaur cake was a huge hit - and it tasted good too...
Talk about 'at home on the farm', little brat had a great day and when I asked her what was the best bit she prattled on and on - and unfortunately I could only get the key words - but it was so sweet to hear the excitement in her voice.
A quiet moment at the end of a lazy mother's day.

Bubbles

2011-05-08T20:24:00.000-07:00

Well Mothers Day is done for another year. This year Phil had a cold - he still troopered on to make buttermilk pancakes for breakfast and chicken noodle soup for dinner. I know that Mothers Day is not the most important day of the year - a load of commercial hooha - but these days I do miss Mum just that little bit more than usual on that day. As I watched the twins play - bring me in the gifts the had so carefully chosen at the school mothers day stall and as I then played with them - I appreciated the day even more. It occurred to me that the best thing about Mothers Day was I felt more free to sit and play with the kids. I could ignore the piles of washing and marking and cleaning that all really needed to be done and play shops with the twins instead. Then I Hannah and I took the dog for a walk and when we got home we got out the wave wand she received at a friend's party recently and we made 'big bubbles'. Lovely.
This morning in the school I was chatting to a mum who couldn't get her daughter to school today - she commented that she thought she'd do better in 'the other class'. I had to laugh - the other class is Hannah's and I am thinking the opposite!! She had very clear and reasonable explanations for this - which were also why I think Hannah would do better in her daughter's present class. LOL>

Manly for a day

2011-05-06T21:28:00.000-07:00

The only thing better than fish and chips by the sea was the gelato we had at the end of the day...
Calamari Kit
Sandy play

Sandy boat
On the Ferry
Things are a bit stressful at the moment - not hopelessly so but I am very disappointed in the contrast between teacher approach for Hannah between last year and this year. Feel so badly about it that at our meeting with the principal this week I am going to ask if she can be moved into the other year 1 class - a move to surely enrage her existing teacher - and something the principal probably won't allow unfortunately but I feel so frustrated that I have to at least try. If nothing else it will communicate the level of my dissatisfaction.Needless to say then when my work had their picnic day at the beach on Friday it was a nobrainer that the twins would be allowed to skive off school for a day to come and play with me... we had a blast. And I feel so much more positive...

special me

2011-05-02T20:51:00.000-07:00

Years ago a common prayer used at just about every high school retreat I went on as a student was about being special. That prayer took on a whole new meaning when my daughter was born with Down Sydnrome and its meaning changes yet again now that I am doing my damndest to support her right to be educated with her peers just like any other kid.

I'm special
I am unique
In the whole wide world there is nobody exactly like me
and I even have a twin.

We are unique
we are special
Mum says we are the most precious things in the whole wide world.
I bet your mum told you that too.

Now we go to school. I am less special
I am just another one. I am more special
so many things are "too hard" for me.
We are twins, we are both special
I wish school saw us that way too.

In the special classroom everyone belongs
We try and work alone,
We try and help each other
When we're really stuck
We go and ask the teacher.

There everyone is special, everyone belongs
I am good at listening. He is good at maths.
The teacher works so very hard
the focus remains on us.
What we learn is by the way
How we learn is everything.

I am very special, I am smart as smart can be
I am very special but learnings hard for me
We work alone, we work together
Our teacher lights our path
and we both know that we are unique
as special as anyone else can be.

Holidays are over 'normal' resumes

2011-05-02T19:49:00.000-07:00

Then the kids had parties - three to attend in 2 days... talk about the life of Reilly!! They had a blast
My girlfriend had a bit of a royal soiree which was just lovely...

Traps and cages

2011-04-28T06:46:00.000-07:00

A mum posted a great bit on a DS forum about her son being 'trapped' - that is not being able to do what he wanted to with his 'typical' peers. It was lovely and it made me cry - but it is not mine to share...My reply is however all my own - here it is -

I remember talking to a 'new' Mum (I think Han was about 3?) and we had fun and she clearly could see how much joy Hannah brought to me and her Nan (my MIL was there!!), she could also see how 'normal' Hannah was ... so when she asked me whether the sadness 'went' I had to be honest - and say that I don't think it ever does. It hasn't for me yet. Our kids struggle - how is that not sad??? No parent wants to see things be so hard for their kid - and then on top of it society sucks at welcoming them!!!
But I could honestly tell her that the sadness gets less - and it definitely has for me - but there is a part of me that will always feel sad when my gorgeous girl, 'trapped', can't do the things she really wants to do. There is also that part of me that smiles with pride and enjoyment when the sports teacher says - that she has NEVER seen a kid try so damn hard to do a skill - as when my Hannah participates in sports lessons - cos yeah it sucks that it is so hard for her but how fantastic is it that noone else I know would just keep trying with such grace and dignity as my precious girl and your little man?

Easter

2011-04-28T06:00:00.000-07:00

I am a staunch republican but who can resist:
a ritual such as a wedding with lots of frills and tassels and pomp and circumstance?
the marriage of Princess Diana's son?
history i the making?
Here is my royal stash - and of course I will be making royal sandwiches and attending an all female soiree in honour of the wedding of Kate and WIlls.

It was lovely to see Hannah and one of her cousins hit it off:

Well we are all back in the Sydney after our 'roadtrip' to Brisbane. The twins went back to school yesterday and I went back today. Easter was lovely up north with my family. It was also good to be home though. Here are some pics:These two boys are only 1 year apart - but they rarely see each other - and yet they pick up the threads of a friendship bond that I am in awe of. Cousins.

Practising her dance moves

My great niece
At the park near Dad's
My talented niece, her mum and in the painting my parents.
New Italy was on our roadtrip home - I think I was the most excited of all of us. After all we live in Little Italy in Sydney and the twins learn Italiano at school and lots of their friends have Italian backgrounds. It was too good an opportunity to ignore.
Rather than take photoes of the long line of trailing cars backed up at Buladelah - about a hour to travel 15 kms!! I took this shot of the skies that would soon be dark and drizzling with rain - in the same traffic jam. We were so glad to make it home in one piece!!

Suttons Beach

2011-04-21T15:38:00.001-07:00

Yesterday was payday and as Dad had to wait for a tradesman I took myself off for a wee easter shop at the local shopping centre. I couldn't resist this Love 2 Dance dress for little brat. And she couldn't wait to try it on - and dance along to Hi5!
When the two boys are together Hannah gets left behind a lot. I even stooped to bribing them on Daniel's second day here - they could have their dses back after they played with Hannah. I am not sure it is a tactic I want to use regularly but seeing how much fun she had squealing and running about with them. I think it was ok as a last ditch effort. Her favourite games at the moment are duck, duck, goose and Hide and Seek. Needless to say Kit, Gra and I have also played a lot of these games.
Hannah and I drew a Hi5 for dancing on and then a swimming pool...followed by some digging in the sand for a tea party in honour of my birthday, complete with lolly bags.
I told little brat not to sample the salt water - but she went back for seconds...then had the nerve to complain to me on the way home that she had sand in her mouth!! A nice cool drink of milk fixed that.

Here Kit and his cousin Daniel are engaging in that timeless sport of children at the beach. They found a hermit crab and were helping to 'protect' him. Lol! I think we left before they'd killed him with kindness!

There has been quite a lot of this for Kit and his cousins. Daniel is one year older than Kit and they get on like a house on fire. SO Daniel has been over a few times for a sleepover and to play. I get themt o turn of the technology at various points in time and as you can see from the above pictures - it works a treat and they have a blast.

Our roadtrip

2011-04-17T16:01:00.000-07:00

Buladelah

Forster at sunset

Forster in the morning
Any kid who has ever travelled the east coast of Australia will have childhood memories of this place. It is indeed an icon. It is part of the shared cultural history my husband and I have for example - even though our childhoods were quite different both of us remember the family car, hot summer days and stopping at the big banana. Well it is smaller than I remember and inside it is no longer a photographic display but it is being renovated and a couple of videos were playing - the theme of the display was the same - the growing of bananas! The icecream sundaes at the cafe still seemed enormous and the gift shop was filled with tacky yellow souvenirs. We had a blast - a trip down memory lane for me and a memory making visit for the twins.

Jumping for fun

It was about 4pm and the beach was almost deserted. Just beyond was a lovely playground. The twins loved these parts of the holidays.

Before the dunking we were all having a ball - although it was a little cold so we simply paddled at the edge of the water.
Hannah got a dunking in the shallow waves - in some ways I think that is worse - cos she was absolutely coated with pretty harsh sand. She got a scare but trooper that she is managed to get back up - I took her tot he car to change her clothes - sat her in the boot to make it easier - she loved that idea (our poodle normally travels in the boot) and wanted to ride in the boot as the family dog when we went to go home too!! Imagine what my pals at DOCS would say about that!!lol.

How cool is the Bunya nut tree? I love them!
The food and service at Phoen Wong in Coffs was very good. Every time we eat out somewhere Asian the twins have a go at using chopsticks - they weren't able to eat using them but they did improvise and entertain Dad and I with them

We stopped at Ballina to meet in real time a virtual friend from the Aussie DS forum I am on. It was lovely to chat with Trish and her daughter Jodie who is almost 21 is a lovely young woman.
We got to Dad's and the twins obviously felt right at home. They immediately found a box of mobilo that I had sent up for my nephew's stepdaughter - and got to work building.

5 years old

2011-04-11T00:59:00.000-07:00

Well, well, well it appears that the shamptons is 5 years old this month. The only reason I noticed this was because I decided to go back to my first year of posts and reread them - it was such a wonderful stroll down memory lane. I really must try and keep a copy of these posts for the twins to read one day. Sometimes I feel so silly - the things I write I wouldn't necessarily ever say in real life... then if a family member or someone I know in real life reads my blog I feel like an embarassed teenager who foolishly published her personal journal and was then surprised to see that someone she knows read it...at other times the vanity that is me wonders why this isn't the most popular blog in the blogosphere - after all - how exciting is my life??? and aren't my twins just adorable!!

For a while the shams felt the blow that is fb. No fun memes anymore either... when I started there were a whole group of fantastic blogs - all of us with young kids with ds. There weren't many with older kids. Now I know a few with older kids with ds and some teens with ds with their own blogs - it is a more diverse collection of reading. It still has an important place. In the busy day to day the shams is a place I can come to and relax, and try and organise my thoughts, maybe do a little advocating on the side and overall gain a whole lot of worthwhile advice and share an awesome amount of joy with other people. I wonder what the place of the shamptons will be in another 5 years?

So - happy blogiversary to us and thank you to those kind enough to read sometimes too. Here's to the next 5 years....

Easter celebrations

2011-04-10T16:20:00.001-07:00

Hannah got new glasses - 2 for 1 - so it seems a good time tot ry and get her to look after them more carefully - and put them away in a Little Miss case each night - so far so good!

Not all of Phils family will be here at easter so we all caught up yesterday for an easter lunch. It was lovely. Here are some pics:

Can Do!

2011-04-09T15:34:00.001-07:00

It's autumn and holidays have just begun. I love the 'can do' feel - like we are going out for lunch today and I have made the rainbow jellies and am planning on making a persimmon pudding too. Last night we had 2 curries complete with Naan (Hannah's favourite bread). I have 2 quilts to get done by Wed, some school work due then too, a bunch of other stuff booked in - like getting new tyres for the car, lunch with friends, dinner with other friends, ST for Hannah, a playdate for Kit while Hannah is at ST...and yet I still have that 'can do' feel.
Dads and daughters went to Hi5 yesterday - cos my girlfriend and I didn't want to go. They had a blast. Phil says Hannah was a bit overwhelmed at first (it has been a while since she has been to a concert) but then settled quickly. I asked if she and her friend did much dancing (cos they did heaps at the Wiggles last year) but he said mostly they sat transfixed by it all. tHere had been some gags about the dads popping into the pub before the show for a beer and one of them (not Phil!lol) ogling the young blondes in the band but in the end it seems no beer was drunk and the only ogling was Hannah announcing loudly that Tim was "My boyfriend'. She was obviously very tired from all the excitement though. She also brought home a heap of Hi5 paraphenalia some of which will be going up on the walls of the twins' newly clean room.

Friends

2011-04-04T14:02:00.001-07:00

I sent an email to the partygirl's mum - just thanking her for a great afternoon. I mentioned how great it was to just drop Hannah off and not have to let the staff etc know that she had Down Syndrome - for the first time! Here is her reply:

Thank you so much for your beautiful email Shelley. Since the start of
Kindergarten Axxx has always said that Hannah is her best friend.

Just between you and I, when Axxxx was putting together her party bags
she made sure to gave Hannah and Kit the best gifts. If you still have the
silver boxes, you will see the no. 2 and no. 3 sticker underneath, the no.
1 sticker went to Axxx (of course) for her own party bag. As for
everybody else it was random.

How sweet is that? Axxx Mum is lovely too... I am sure it helps cos the parents of Hannah's friends really support their children in including Hannah in their lives.

Hannah's family - and her glasses

2011-04-03T20:44:00.000-07:00

After the visit to the opthamologist last week I called in at the shops. Hannah really didn't want to go but I had to get a couple of things. We were at a toy shop looking for a gift to take to the Fairy party when Hannah spied the DOrothy the dinosaur costume. She wanted it. I gave in - and then of course she wanted to wear it right away. 'Now Mummy' so we got the the car and given the synthetic material and her long sleeve top and the heat I took her glasses off, placed them on the roof and took her top off before helping her to put the costume on. Then I drove off to get Kit from his friend's house. I was just about to pull up outside the local butcher to grab something for dinner - wut to no avail. Then I looked around and saw that Hannah did not have her glasses on and then I remembered. Well the air turned blue and round we went back to retrace our steps from the shopping centre car park. No luck. I was buggered. You wouldn't think that waiting around all day at the eye doctor would do that but Hannah and I were both tired. And I was stressed - those glasses aren't cheap. I got the specsrus from the US that are meant to be designed with the facial shapes of down syndrome in mind. Other parents swore by them and we had found them to be great too.

I got home and rang all the optomertirists in the centre as well as centre management but to no avail. Specsavers were the most helpful taking my details and promising to ring if anyone did hand them in.

The next day I was driving to work and realised half way there that I still had the kids spare car seats in the back as well as their change of clothes for after school soccer training and dance - which I was meant to drop off at my inlaws in the morning. Yet another crap day I figured. Lucky for me my HOD generously offered to take one of my classes so I wouldn't have to rush so much to take the seats to the twin's grandparents. That night when I got home I saw that Hannah wasn't wearing the spare pair of glasses that i had sent her to school in. She had lost them at school - so then we had no glasses left for her.

She is so good about wearing them so I am guessing it was related tot he fact that I had lost a pair yesterday...Her teacher had written me a note to say that they had gone missing int eh infants classroom and that they hadn't been able to find them but would look again the next day. Phil and I both nagged the little brat so that when we asked what she was going to bring home from school the next day she'd say 'my glasses'. And bring them home she did. When I asked her if her teacher had found them she said no 'all my friends'. In fact the little girl we drove to the fairy party on the weekend told us she had found them buried under a tree. She said that Hannah hadn't done that. Still I took the little brat to specsavers and got her 2 for the price of 1 new glasses - just to be sure. {Edited to add: Today another mother spoke to me about the glasses - her son told her that another little boy D was responsible for burying Hannah's glasses. Now I know this little boy and he has a bit of a rep for being 'lightfingered' shall we say? Anyway I felt bad cos I blamed Hannah when it clearly was not all her fault. The teacher hasn't mentioned anything beyond that they were found. I might have a word to her - only because I don't want her to think of it as being Hannah's fault in losing them...she probably knows already with kids being kids - if they told their parents one of them probably told the teacher}

At the year 1 mum's lunch I was chatting to the mother of one of Hannah's friends. Kit and I talk about being on Hannah's team. Well this Mum said her son and another little girl talk about who in their school is part of Hannah's family. The same principle I gather as Hannah's team. This mum also said that her son reports one little boy being quite mean to Hannah. She didn't name names but did say that she had given her son permission to 'push back' if he came picking on Hannah again. There is a part of me that is unhappy that someone is being mean to her - they are such a great bunch of kids and so supportive of Hannah that you'd have to be crazy to do it really - but there is another part of me that is so proud of her friends because I know they would stick up for her, and of Hannah too because I think she has some good protective behaviours to help her manage the small stuff. I will ask my friend again next term if her son reports anymore incidents.

Fairies and Parties and Living Easy

2011-04-02T13:47:00.000-07:00

I love this photo of Kit. He looks more like an angel than a space ranger!
Hannah loves craft. She is always making 'presents' for me or her father. Yesterday I was chatting to one of her friends from school. Claudia tells me that she sometimes helps Hannah make a cake on her ipad (cakedoodle) but that Hannah says they have to wait for me [so I am assuming it is a birthday cake for Mummy]. It sounds like after a bit the girls are allowed to 'eat' the cake regardless.
Sleeping twins
Hannah is really enjoying Dancing Hearts - her dance class for children with special needs. I can't go unfortunately but am lucky that her teacher is a mum at the twins school so I check in that way. For some children she prefers their parent or a volunteer to help out but luckily for me and Hannah Hannah is pretty self sufficient and needs little 'extra' support in this way. Lucky for us because I would hate for her to miss out on this opportunity. She goes to a regular dance school on Saturday but I can't see it lasting her that long - she won't be able to do what they want kids her age to do in a year or so at most. So this little class run by the goodwill of people like Hannah's teacher is very much appreciated. I am hoping it will allow her to pursue her passions and have a fun activity for years to come.
We took Hannah and Kit over the bridge to the more posh side of town for a Fairyland party yesterday. They and all the other kids there had a blast. In fact Kit told me when we got home that he'd like a Fairyland party for Hannah and his birthday this year. It is a place with rules that runs on a schedule. They start in the fairy garden where parents and photoes are allowed and then go upstairs to a fairy room for party games etc where parents and photoes are not allowed. Do you know how nice it was to just leave the twins (and one of their friends that we took with us)? I knew that Hannah would be fine. She would and could follow the other kids and enjoy herself - I didn't even do the 'she has DS, call me if you need to' talk. I am not sure if the party girl's Mum had or not - what I do know is that no 'extra' help was needed, beyond what you would do for any child to make them feel comfortable and part of the event. Lovely!
In the fairy garden
Hannah with her balloon puppy.
Only one week until the school holidays...when we'll be living it easy...Living It Easy by 15th Parallel

Good news

2011-03-30T03:50:00.000-07:00

With a friend
Pass the parcel
THings have returned to a semblance of equilibrium here in the Dock. Our great friends from around the corner have signed on a property about 4 blocks away - so not as close as before but thankfully still in area!!! Yay!!!! My dad has finally sold his place in brisbane and is glad to have a bit of freedom I think.

Hannah's opthamologist was happy with her today - so no going back there for 12 months. Things at school have settled down a bit and I am feeling a whole heap better about the way things are going - of course I want more but I think genuine stpes have taken place in the right direction.

One of the boys the twins have known since childcare had a party at a park near school last Friday - and cos I work I couldn't take them (they go to after school care usually) but Ss Mum offered tot take them - she has 4 of her own and while you might think that means she has enough on her plate - to me it meant she had the big car to cope and she is one Mum who has offered to take Hannah in the past - she isn't particularly worried about having her and how 'different' it might be - so I took advantage - and the twins went.

By the time I arrived the party was in full swing and not that far off being over. My friend was a bit put out cos she barely got a chance to 'mother' Hannah - her friends from Year 1 took over! Indeed when I got there I had at least 4 little kids eager to tell me every mishap that had befallen her - from her best friend accidentally spilling his chocolate milk all over her at school, another little boy getting juice on her skirt at the park and someone else had knocked her over on some piece of play equipment - all these messages delivered whilst I was looking at one very happy little girl totally at home in her surrounds and with her peers - it was a magical moment.

A couple fo the mums know how hard I have found things recently - they wanted to know how things were progressing - and a coupe offered to write letters to relevant authorities if I wanted - if I thought it would help. Have I mentioned that one of the lessons I have learnt these couple of years - is how Hannah is my gift to our community. People are looking for opportunities t help, to connect, to care - and Hannah gives them that in spades - with a very sweet return in her love and friendship.

Tomorrow is her special needs dance class which she is so excited about, chess club in the am and soccer in the afternoon for Kit. Life sure gets busy - I can't wait for the holidays. Also today I rang the pool about classes for Hannah next term. I'd love her to be int he special needs class (1 on 1) but there never seems to be a vacancy. Still - the coordinator swapped instructors and capped the class - just because I rang to draw her attention to the fact that Hannah had a different teacher next term when I think the one she had this term was great.
Sorry for the lack of photoes - the brats have a fairy party on the weekend - I'll see what i can do to improve the situation.

Carrington

2011-03-22T04:15:00.000-07:00

I don't know what to say on this one but prayers from the heart seem the best thing to offer this little one at the moment. I occasionally look at Reeces Rainbow - its pretty confronting. I don't really feel comfortable with the whole prayer warrior thing or the missionary zeal but I am a believe in God, pacifist and power of prayer sort of gal and this little one needs some prayers at the moment. It's funny cos I saw another video clip just this morning - and I was hesitant about putting it on my fb page - it's got that missionary zeal stamped all over it - but it also has a beauty and dignity that I wanted to share - so I got over my squeamishness to share the message within - one that is very close to my heart - one of virtue and grace and earthliness too - and Trisomy 21 or mosaicism or translocation...Down Syndrome.

Remember to B-R-E-A-T-H-E

2011-03-18T00:36:00.001-07:00

A few years ago, things were pretty bad. My blood pressure was high, I was having panic attacks as I drove about my usual business, I was having trouble sleeping and DH and I weren't our usual 'in sync' either - everything seemed out of kilter. It was funny because that year that was so stressful for me was actually a stunner for the the twins. They were 3 and we had so much fun watching them blossom. Looking back I am still surprised at how much pressure trying to afford a house in an area we wanted put us under. Plus I started studying part time, I was working and still desperately trying to have my 'ideal' family life of clean house, happy stimulated children (well therapied in Hannah's case) and an extended family dinner each week - with no dishwasher!! On one afternoon when I was feeling particularly low, I spied this printblock (pic above). It says "Feeling a little wobbly", I had to buy it and it hangs on our picture wall reminding me that I will continue to have those days but that I hopefully will manage them better each time. Yes I now see myself as clearly insane. My GP recommended a well known antidepressant - I took one but no more - I deferred Uni and held on...

FFWD a year and we are under a ridiculous amount of pressure in finding a school to meet the needs of the twins - especially Hannah - it was a stressful and confronting time but I managed to mostly keep the anxiety at bay. Then the last couple of weeks blindsided me. I don't see Year 1 as being a stellar year for Hannah. Nothing in particular wrong with her teacher - I just don't know that she has what it takes... she is lovely and a good performer in the classroom but she is set in her ways and doesn't seem to be very able to differentiate within her lessons. So I have reached a point where I am going to just put my head down and roll with it. DO what I can to improve the situation for Hannah but expect no shining lights. My anxiety was back in full force. Then work had some sage - basically my exams were today and I have to have them all marked by Monday - an enormous feat and a lot or pressure....I was chatting to my Head of Dept about the time I was having and we were commiserating on the workload - I made a comment to one of our colleagues that we just had to remember to 'breathe'. This colleague was one I had sat with and talked through some of the problems I was having at school for Hannah.
The first lot of marking came in on Wed - not my day for working My Hod rang and said not to come in especially - he knew I had a meeting at Hannah's school in the morning that I was worried about. My colleague dropped over with my first round of marking that afternoon and brought this wonderful gift with her. It made me smile: Together these candles from Oxfam spell - you guessed it - B-R-E-A-T-H-E.

Something I need to remind myself to do for a bit longer I suspect.

Dancing

2011-03-11T17:12:00.000-08:00

After the shouting incident a couple of weeks ago I was pleased to hear that Hannah did great at dance this morning - good listening to the teacher (and no shouting from him). I have also found a dance class just around the corner that is for 5-11yo with a disability. It just started up this month I had to reorganise after school care and pickups etc but it will be worth it. Her swimming instructor is also the dance instructor which I think is fantastic. I bought her a dance costume for the new class and she was very keen to model it.

I have spoken to her teacher about some concerns I have there. She is a lovely person vivacious and approachable but the gap in her understanding about special needs is well and truly showing up. Never mind I think that we will get there. She is going to the NSW DSA workshop so I know she will get a lot out of that. At the moment I think she is overwhelmed by what she sees as Hannah's deficits - when the issue for me is her deficits!! There are some pretty simple organisational things that can be done to make things run more smoothly so I will be looking to see when and where I can hint or suggest them. I want her to take responsibility for Hannah so am trying to be patient.

Initially I think it is about her developing techniques for managing Hannah's behaviour - she hasn't been able to get Hannah to sit at a desk for any length of time for example or even to leave her bag outside the class. Once she takes control rather than let Hannah be the boss things will get much easier for her. I have dealt with the bag issue - will check that it is still working next week when I help in the class. I did mention to her that the best thing she can do for Hannah's self esteem at the moment is to get her sitting with the other kids doing similar or the same work. When in doubt quiet drawing or reading ... so that Hannah sees herself as a valued part of the class learning. I think the teacher has been afraid to call on Hannah to write on the whiteboard for example because she doesn't want her to 'fail' or be embarassed. I think she needs to give Hannah a go so she sees what she can do and praise her for trying. If she doesn't let Hannah have a go she won't learn just what Hannah can do easily and what she needs help with. At this stage and with such great kids I think it will work. Alternatively for writing on the whiteboard if she finds Hannah can't do it - she could do as usual and then get Hannah to copy the word underneath - so the first child helps by modelling (which they'll like doing) and hannah learns and participates by copying. It broke my heart the other day not to see her even raise her hand to try - when I know in other settings she'd have her hand up in a flash to go do something on the whiteboard.

I also would like to see her paired with one of the advanced girls in the class - a little girl who whizzes through her work and then finds time to socialise etc - her energy and learning could be used positively by training her to 'help' Hannah a little to stay on task. I know she could do it and I know her parents would be happy with that because it might address some of their concerns about her rushing through her work and wasting time. That gives the class teacher time to devote to her other students - surely a win win situation. Last year we agreed to get Hannah working diligently first thing - then she is rewarded just before recess and not pushed so much in the later part of the day which I think is a reasonable and pragmatic approach. Some of this valuable morning time is being wasted unnecessarily at the moment. There is also a box of activities there from last year - the teacher could set it up so that Hannah could get a worksheet or activity from there to 'stretch' her sitting working time more... hence I think the first major hurdle is helping the Teacher gain control of Hannah's behaviour, the rest should follow.

At the moment there is good will but not a lot of joy in the relationship between Hannah and her teacher. I can honestly say that by midyear last year it was very obvious that Hannah's kindy teacher genuinely enjoyed watching Hannah grow and learn (and found her less challenging than some of her peers!). That is where I want to see her Year 1 teacher get to too but I realise it is a journey, a step at a time... we will get there. Team Hannah is unbeatable!! ANd this teacher has some wonderful talents and teaching styles that should enable Hannah to blossom they both need a bit of nurturing at the moment. have started talking to Hannah about it as I find the direct approach in this area works best - so when we talk about it I say to her that it is up to Hannah to show Miss Y just what she can do, the same as the other kids. Show her that you are a Year 1 girl like the others, you can sit at the desk..etc

The teacher said she was happy for a communication book but didn't think one was really necessary cos she sees me about etc... that might be something we need to reconsider..hmm it is on the backburner for now I don't want to alienate her - she is our chance of success but we have to learn to work together on this - she is part of Team Hannah even if she doesn't fully realise what that means yet!

Count Me In

2011-03-01T00:26:00.000-08:00

Not sure how to put this in the side bar... disability has been sadly neglected and underfunded in Australia, finally things are starting to at least make the political agenda and just maybe we will achieve a fairer go for the many Australians with disabilities, and their carers too.

When I feel frustrated with the lack of resources for Hannah I try and remember just how lucky we are because we can do an enormous lot on the smell of an oily rag. Imagine what could be done with adequate resources?

The media coverage has been very positive an tentatively there may even be a level of bipartisan commitment to these reforms.

Here is the extract from the Count Me In site (which is linked in the title of this post)

In the meantime the key points are:

The Commission has accepted that the disability system is "inequitable, underfunded, fragmented and inefficient and gives people with a disability little choice ... a real system for people with disabilities is required." The Commission has therefore accepted the need for reform and for an NDIS.
The Commission has also accepted that the nation must better meet the needs of those people who currently do not receive any or only inadequate support and that their improved support packages would be portable across state and territory borders.
The Commission recommends the introduction of a fully funded National Disability Insurance Scheme with individualised funding to ensure people with a disability and their families are able to exercise greater choice and control about the supports they need.

Doctors

2011-02-28T18:57:00.001-08:00

One small thing I meant to write about here was our visit to the drs yesterday. The twins have a great GP. When they were born I simply took them to the local bulkbilling one I'd always used. He was scared of Hannah. He'd read her hospital release forms and the follow up letter from her OHS and could hardly bring himself to touch her he was so frightened she would break. When I said I wanted the flu injection for her (on her paeds recommendation) he looked very nervous. I had to tell him it was ok and what dosage was required. When it came to immunisations he used to make me come in intervals because he would only give her one shot at a time - a horrendous thing when you have twins and for that early stage it seemed as if I was in his office every week. Once I got a girlfriend to come with me so I could insist that he gave them both the shot at the same visit. He was oldfashioned and fussy and clearly not the best choice for a long term GP for us.

Once we had settled into the area where we now live I went and tested out the local family practice. I took her to a couple of drs there and in the end settled on her current GP - a fairly young (for a dr) male who had studied some paediatrics and worked in a regional hospital. He is great with Hannah and she loves going to see him. He speaks with her and is willing to communicate clearly with me about her medical needs. He acts in a way where I can see that we are part of 'Hannah's team' - a good model for her future.

So in that spirit when I took her yesterday - I prompted her to tell him why we were there. I had to remind her to look him in the face but the rest she did beautifully on her own - the benefit of a pussy ear - the visual is a great indicator of what is 'wrong'. For his part her GP was totally comfortable with that and as I walked out I felt good - a small step had been in my daughter's empowerment and self determination. Now if only the ear would stop oozing - it is grose!

Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard

2011-02-28T13:03:00.000-08:00

Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard

I've been itching for this one. Hannah was home sick yesterday with an ear infection and I thought to myself - I wonder if that book will arrive today (it was due late Feb early mar)? Well just as I was heading out to the Drs to get little brat some antibiotics - the postie delivered it to my door.

Perfect for a flick through while waiting at the local GPs. I'd already read the sample pages taken from the introduction and they were good so I had high hopes for this book. I read it quickly yesterday. It's Australian, it's current and it's well researched so yes - it lived up to my expectations.

I like the clear organisation of chapters through life's stages. I read the diagnosis chapter and then skipped ahead to the schooling one: Learning to be Normal, Learning to be Disabled. It was a scary chapter full of challenges and no easy answers but that is not unexpected I guess. Our experience of schooling has been fantastic - so much more than we dared hope for even as late as the year before the twins started school, but then we are only 1 month into their second year at a regular local school...

The chapter I enjoyed reading the most was School's Out: Rights and Rites of Passage because here was a range of stories full of possibility and fun. Some wonderful quotes from interviews with parents and young adults with DS like Benita's mum who says what good company her daughter is and Michael who wants to stay living at home so he can look after his single Mum. Controversial issues like relationships and steralisation are raised and dealt with expertly - letting the families speak for themselves.

The writing style is less journalistic than Kathy Evans Tuesday's Child and corrects one of my bugbears in that book about portrayals of disability in literature and media. Gothard gives a clear yet concise overview of down syndrome in the media, specifically addressing changes in visibility and attitudes. Evans of course is opening up her own experience in all its scary intimacy - the divine and the hideousness of coming to terms with what is undoubtedly a lifechanging diagnosis. Evans states "My child is not my child; she belongs to the world of science. Once she was diagnosed, she ceased to be a baby and became a medical anomoly." Six years on and I still understand the anger in those words. Gothard presents a chapter on medical issues "It's not a disease you know!". She contextualises the diagnosis of DS and the range of potential accompanying medical issues in a way that is the best I have ever read. If I was a new parent on this journey the this is the medical chapter I'd be recommending. In a straightforward way without emotive overtones but the judicious use of quotes Gothard gives the medical profession a slap on the wrist and holds up models of best practice. She recounts people's real experiences. Reading this chapter I learned things that previously I had switched off on no doubt because of the 'horror list' they are so often presented as. This was a refreshing change in approach.

The book is squarely set in WA - and so coming form the eastern states it really opened my eyes to how a different state deals with disability. I loved reading some of the stories that were clearly specific to that state. The inclusion of aboriginal families was well incorporated. I'd love to meet Charlie King and his family - they sound awesome! In fact reading of the kinship system that supports him summed up what we are trying to achieve here in the city of Sydney for our daughter. A fact that Gothard identifies "His extended Aboriginal family - siblings, cousins, aunties and uncle - involves a broader family network than does most non-Indigenous families, and this network serves exactly the purpose that many city-based nuclear families are presently trying to achieve for their family member with a disability." So there we are - included in this wonderful book. Not everyone has Charlie's experience obviously and Frank is a good contrast to this. "Frank's extended absences from his family have disrupted the development of the kind of network within the Aboriginal community which has spontaneously grown up around Charlie."

It also incorporates views from a multicultural society. Making this a sound overview of a range of attitudes and experiences in the world of Down Syndrome. Gothard clearly identifies her own interests in the subject and I was very interested to read her discussion of her research methodology - how to incorporate her own valid experience yet let others own unique voices be heard unhindered. How to respectfully include the views and experiences of people with DS - not solely relying on the 'high functioning'. You can tell that this is a crafted work done with love. Each chapter generally has a positive observation or comment as the ending, my favourites being one on the role of organisations such as DSAWA "Together they continue to raise expectations and generate hope.' and the heartfelt tribute to the vanguard of parents from the 1950s: "Nonetheless the cautious optimism we can dare to feel today is at least partly a legacy of their commitment." The least positive end comment is unsurprisingly in the chapter on education. As Gothard concludes: "Where full inclusion is absent from society as a whole though, it is hardly surprising that you can't always find it in the classroom." A call to arms? I think so...

Lastly for inspiration in this book you can't go past the last and briefest of chapters - "A Different Way of Looking" - a beautifully written summary of Greater Expectations held today by a whole lot of people, realistically, idealistically searching for the best inclusive practises. A perfect read for the day the draft of the Productivity Commission's report into disability in this country is released. I was reminded of NSW DSA's Buddy Walk 2010 slogan - 'we've come a long way baby!' The future for our family is indeed bright and full of greater expectations. This book is a wonderful addition, a guiding light to the next generation of citizens, parents and activists however we choose to define ourselves.

PS I also loved this paragraph in the last chapter - cos I can identify with it!
"You soon find yourself embarassed by your own hyperbole, and convinced they are thinking, 'Well she would say that, wouldn't she!' One mother, who often speaks publicly about her son with Down syndrome, experiences the same difficulty when dealing with this topic, and told me, tongue-in-cheek, that she has to try hard to avoid the 'every home should have one' approach."

LOL. That reminded me of when an organisation (can't recall which one) put a notice in the NSW DSA newsletter about a young boy with DS in need of adoption. I was chatting to a friend, a mum from school who has a 'rainbow family' of biological children and adopted ones from O/S - I was just joking of course (well mostly!) - that Mum didn't go ahead (she has 4 kids as it is!) but she did go home and look up the link...so yes there is definitely something in me that supports the 'every home should have one' (or two ...) approach. lol

PsychoMum or Advocate?

2011-02-25T22:16:00.001-08:00

This is one that I am still negotiating. It's a matter of trial and error - or so I am learning. Take this morning. I take Hannah to her dance class which she loves. I noticed that she had a little ooze in one ear beforehand but she really wanted to go and to all intents and purposes seemed fine. I mentioned the ear infection to her teacher - he is lovely btw - about 23 and he signs (!) Hannah is in love with him (as are many of the little girls). He asked what I wanted him to do - I simply said to send her out if she wasn't coping.
I then went and got a t/a coffee and pastry - and came back and sat out in the foyer with a couple of other Mums. A couple of times I heard him say her name loudly - which is unusual. Then after about 40 minutes I heard him yell "I can't do anything with Hannah" to the woman on the front desk (his Mum) who went down to his class. I hesitated and then got up and went down the hall - to meet her as she was leaving the room. "Is that my Hannah?" I asked. She said that the teacher wanted to see me at the end of the lesson - and that he wanted to suggest putting Hannah back into the younger class because she wasn't coping with the routines in this older group. I sat down and felt tears well up but supressed them.
He was clearly having a bad day - came out with young girl who needed ice and cuddles. Then he spoke with me - said that he thought she'd be better off in the younger group again - and perhaps she could come to that group (her age appropriate one) for the warm up. I told him that that was fine by me.
As she and I walked back to the car i gave her lots of cuddles and hugs. I felt the tears come up again. Another Mum (who was in the foyer all lesson too) asked me how she was going. I said that she was going back to the younger group. We chatted a bit more and then went our separate ways. When I got home I told DH what had happened - I still felt teary about it. The yelling really upset me. It didn't respect Hannah as a person - a person who is working so hard to 'keep up' and who they are lucky to have in their danceschool. I felt that I had let her down by not taking her out as soon as I heard that yelling.
I decided I needed to redeem myself as a parent before next week so I rang up and spoke to the woman from the front desk. I reiterated that I think the teacher is great with Hannah but that I really didn't like to hear him yelling like that. I also restated that I was happy to be guided by them as to the best class for Hannah. Yes I understood he needs to be firm with her but I didn't think that raising his voice so it could be heard out in the foyer was appropriate. Anyways it is done and I feel better because psychomum or no - I didn't just let it pass without comment.
There is of course a part of me that is sad that she isn't coping in the age appropriate group but I don't believe that is what had me in hyper protective mode. I hope not anyway because that is my issue not Hannah's and not her dance teachers either. Sigh. A blip on the journey - one of many I know - I wonder how long she'll be able to stay at dance? Special needs dance classes near us seem to be for older kids....we'll see how she goes next week. I have always dreaded the 'advocate' part of being a special needs Mum - I am such a wimp. Yesterday's incident was minor yet I felt totally buggered by it all. It wasn't about any significant learning opportunity either - Hannah doesn't have to go to dance - she goes for fun, exercise and because she wants to. I am very lucky to have good friends so I popped around the corner for a cup of tea and a chat with an old friend and felt much better. Today I discussed it with another Mum whose daughter is in the younger class - so Hannah will have someone she knows there. There is a strong circle of protective love for my girl that comes from our community. It is her and my safety net and I am very glad of it.
The next day I took the brats to a party. 10 minutes in Hannah's ear was much worse and she just wanted cuddles. Her father came and got her early and I stayed with Kit. Today I have had to take a day off work - I have made a drs appointment for her later on and kept her home from school. Hopefully antibiotics will fix it soon. She seems to be enjoying a day of rest at home.

parties

2011-02-24T03:41:00.000-08:00

Hannah has two best friends at school - a little girl and this young fellow - he's funny and smart and crazy and spirited and caring - what's not to love? Love you Mr Z!
Two very beautiful little boys...
Some great kids. We were very fortunate in the mix of kindy kids we found at our local school. They are just a great bunch of kids in their own right and for us, in embarking on the 'mainstream journey' these little people and their families have been fantastic - couldn't have asked for better...
I's mum says she managed to get a photo of the three kids...
a sliding brat....

Feb - midreport

2011-02-18T17:32:00.003-08:00

Swimming again. Kit was allowed back in the water now his stitches have been removed. They had a blast.

Lots of bits and pieces have been happening but nothing in particular - so here is a random catch up of the days of our lives... With the arrival of all the electronic games it seemed as if Kit would never draw again.... so I bought some bath crayons and he agreed to not play electronic games Tues - Thurs - and voila! A drawing of Ben 10 aliens... I love having my 'boy' back.

A Valentines card for Hannah from her friend Z
Kit has been practising his keyboard regularly with less fuss so that is nice:
Hannah has been enjoying drawing and writing. This morning she didn't want to practice her spelling words but was happy to write out the names of everyone in her family. Speech wise she is doing great too - I can't remember what I had done but yesterday when I said 'no' she went straight to her father and basically said 'make Mummy say yes' the little bugger! Then after getting two teeth extracted I was driving her home - I asked if she wanted her ipod and when she said no I suggested she and I just listen to a cd. I found one already loaded - the Hillbillies which Kit likes but Hannah clearly didn't want it - she signed 'shut door' and from that I worked out she wanted 'Rattlin' Bones' by Kasey Chambers - and so she and I sang along to it on the way home.

I have finally organised for Hannah to have orthotics (again) I am trying a place a bit closer to home hoping it will keep me more vigilant as she really needs some support her arches are really fallen in. Unfortunately this is the only health professional that she doesn't cooperate with! Today at the dentist - she was great. When I take her to the drs - it's the same - she works hard to understand what they want her to do - and then she gives it a go. Not so the podiatrist. It's because he tried to take a footprint to custom cast an orthotic - and the machine scared her. Now she is wary of anything about him - so he ordered in a foam box to use as a mould - no way was she putting her feet in it (even though she has done this before at the old gait clinic) so in the end we went with off the shelf, slightly modified ones. She was happy because they are red and once he'd snuck them into her shoes and she realised that they were ok she was eager to show them to dad and grandpa. Outside waiting to pay was so lovely - I was letting her know that I'd take a photo of them so Grandpa could see them (Dad is in Brisbane at the moment) and put it on my computer - to which she said "Hannah missing Grandpa". How lovely is that? I hope Dad manages to sell his house and come down for a long visit soon. I miss him too.

Blue

2011-02-14T03:51:00.001-08:00

Things have been going pretty well at the Shams. The twins are settling in well at school. Kit was so excited to be elected to the SRC he was just about bursting with pride. Hannah and I have begun trying out routines on how to best manage the homework demands of Year 1 - spelling in particular. So far so good.
Saturday was in some ways a disaster - well return to extra curricular activities went famously but those electronic games and Kit are not mixing well at all. We had the most amazing tantrums - to the point were really he was hysterical and Phil and I were totally angry and frustrated. We are slowly working out the best approach so that he can enjoy his games but not be so overwhelmed by the whole thing. Our rules at the moment - no electronic devices Tues - Wed - the exception being if he wants the computer for something 'educational' such as Mathletics. That worked ok - hence it was the weekend where the wheels came off the wagon - honestly if we don't come up with a sound system that is workable - we will consider saying that the 'devices' are only for school holidays. Television is not counted as an electronic device in our house so Hannah has been largely unaffected by the debacles. Weekend strategy was a total failure on Sat - although the turning off of all devices regardless of pleading did meant hat once Kit had calmed down he and I had a wonderful afternoon while Phil and Hannah were at Rainbow CLub. Dinner was a Japanese chicken salad and I happened to have one of those sushi kits in the cupboard - I've never used them but it seemed a sensible Mother & Son activity. Kit was reluctant at first but soon forgot his computer angst and had a ball. Then we had a bath together - and I have those bath crayons in there at the moment so we each drew a Japanese garden. Well had just loved that - and after saying so a number of times he decreed that each Sat when the others are at swimming this is what we should do. I found a coffee table book of Japanese COurtyard Gardens and told him about the small Japanese garden that we had had at our old house. That night as we read one of his favourite kids books about Monet - and saw the bridges he painted it was declared that next week will be French night at our house. I am looking forward to it.
On Sunday it was decided to do some painting:
Hannah was proudest of her nail painting prowess
The actual painting well the painting on paper:
Did I mention that most of this occurred on her father's watch?
Hannah's fine motor skills are really coming along quite well - check out her little lego bus:

I could hardly believe it...

2011-02-07T18:21:00.001-08:00

Last week I admit to feeling just a teensy weensy bit apprehensive. Phil and the twins were invited away on a 'dads and kids' weekend. A holiday at the beach - with a pool too - was available. Initially we discussed it and decided to just send Phil and Kit. Hannah has been exhausted after school and I wanted her to rest up. ALso I knew she'd probably demand more attention from Phil. Then the email came thorough - dinner out on Sat nights for the Mums. One of the dads was taking his Year 1 son and his 3 year old. Hannah wouldn't be the only one who needed a bit 'extra' supervision, plus there was a few kids going that I knew she really liked and played with - and so we decided to send her too. 6 dads, 14 kids later...Patiently I bit my lip waiting for instructions re food and what to pack. No word. I asked a few of the other Mums. The organisers wife (who is absolutely gorgeous) said that everyone was asking her about it - it was her husbands gig and she'd told him to get organised on it. She did tell us to pack QS sheets. Hmmm as Friday afternoon approached way too quickly I bought poppers, treats and heaps of fruit. Phil and I laughed and wondered how like Lord of the Flies the weekend might prove to be...Friday morning the 'organisation roster' was delivered. A few last minute bits and pieces were done and not long after 4pm I got the call to say that Phil and the kids were on their way.

I stopped off at JB HI FI on my way home from work - picked up a couple of classic chick flicks to enjoy and some take away for dinner. Relaxing at home - it was about 7.30 when I got the call.
Phil: No problem, everything here is fine. I just wanted to ask about Kit.
Me: Yes? What about Kit
Phil: Look he's fine, he's sitting here eating an iceblock.
Long pause.
Phil: He's hurt his head - on the bunks. It's stopped bleeding but he has a jagged cut on his head. It's an open wound. He's fine though. {You're fine aren't you mate? Kit it's mum on the phone...vague sounds of Kit saying my name in the background}
Phil: Do you think I should take him to a dr? he's fine. A (one of the dads) rang his sister - she's a nurse. SHe said it should be ok - just to boil some water and clean it.
Oh Yeah - did I say Lord of the Flies? What could I say? I told that man to get my son up to Gosford hospital asap and ring me as soon as he got there. Eventually he got in to see a dr who gave Kit 2 stitches in his scalp and told him he couldn't get it wet - no beach, no pool. In true Dad style - he went to the beach with everyone - and it got a 'little wet', then he had a blast in the water fight! It's not that his father doesn't parent him - it's just a different style isn't it? Anyway the twins had an absolute blast and came home very excited about their time away.

One of the questions phil asked me was what to do with hannah while he took her to the hospital. Leave her with A and D (the 2 other dads who were up there that night) I suggested. Which he did. These are dads we met at school last year. Lovely men. I knew they'd be fine with Hannah and they were. The next day Phil was out shopping (for dinner!) and the kids all went in the pool. Hannah wanted to too. When Phil got home A said that he'd not known whether it was alright or not but then decided 'why not?' and so little brat was happily playing around the edges of the pool when Phil got home. That's what I think is great about dads parenting - and although it may have resembled an episode of SUrvivor - survive they did. Survive and thrive in fact. Lol.
And on an even brighter note... I had driven out to mind my nieces and nephews while my SIL drove to the hospital thinking that her BIL was going to pass away that night. I got to her place about 10pm. She returned at 6am. He was still going. I wondered how on earth they were going to keep this up. Her husband (my BIL) had been up there at his brothers bedside for a long time. They wouldn't be able to keep it up. He was still only early 40s it may take days before his body finally stopped. I rang her that night. The hospital had spoken to them. He was going to be moved from ICU to palliative care. I wouldn't be needed to mind the kids again that night. I was relieved for their family.
On Sat morning I woke up alone in the house except for our dog. It was bliss. I pottered around and then thought I'd ring my SIL to see if she needed any help and to hear how Miles was going in palliative care...well MY LORD!!!!! Apparently they'd shifted him to a heart ward en route to palliative care. They were still treating him palliatively. At one point his morphine was less and he spoke and tried to sit up. He recognised his father and his friend who was there. He smiled at his dad's bad joke...How fantastic is that??? He didn't recognise his girlfriend but he has only known her for just on 1 year - and originally we were told that 'best case scenario' was that he will have memory loss of around 8-12 months. Well that is what it looks like now. They started treating him again - hiving him antibiotics for his chest infection. Managing his pain differently and putting him back on the ventilator. I still can't fathom it - it was such wonderful news. I know it's likely to be a hard road of rehab and he isn't out of the woods but FGS - his family are thinking about planning rehabilitation where just a few days ago they were discussing funeral arrangements. What a wonderful world we live in. I had a pep in my step all day just thinking of him. I haven't rung again - I want to give them time - but will ring again in a day or so to see how he is faring now. I am so happy for him and my nieces and nephews - they may just get to keep their Uncle Miles for many more years. I sure hope so.

Uncles

2011-01-31T13:14:00.000-08:00

I come from a matriarchal family. I have few recollections of my uncles. Mum's brother was young and wild. I have a couple of happy memories of him - in my aunt and grandmother's house in Brisbane - teaching us kids to spit, giving us sips of his beer (XXXX of course!). We didn't see him that much - he was roaming, brawling and labouring with a bit of rodeo riding on the side. There is a photo of him that I love. It reminds me of the 70s cigarette advertisement - Marlboro Man.

Years later when my family were in Sydney and i was in my early teens we had a couple of Christmases on our own - just the 5 of us, Mum, Dad and the three girls. All our extended family were in Brisbane and country QLD. One year I can remember our excitement and joy when unexpectedly 2 people rocked up at our door. Yep, mum's brother had finally found himself a good woman and on the spur of the moment they decided to park the truck and visit us. (Family rumour has it that the QLD constabulary had suggested my uncle not return to QLD - I don't know how accurate that rumour is but he moved to Vic and then later to WA where he still lives - with that same 'good woman'. My eldest sister keeps in touch with them.) It felt great to have some other family around at Christmas. Mum was absolutely in her element.

Then there is the 'uncle' by marriage who is best forgotten really - except to say that I feel very lucky that my sisters and I never became his prey. None of that came out until years later but even as kids I don't have any strong memories of him. He was just 'around' although I love his exwife - Mum's sister to bits. And my cousins from that family are great too.

Then there was my godfather - husband to Dad's sister. I liked him a lot when I was younger. I remember waiting out the front of the family home in Sunnybank - watching down the street for an old fashioned figure wearing - I can't recall what they are called - you know - the old mens hats that have made a bit of a comeback this year? I bought Phil a black straw one in fact - but my uncle's were felt, checkered with a little feather in the side -a fedora? He also carried a tattered gladstone bag. He was a labourer and soon he was older and out of work. More recent memories are dominated by his absence. He was usually at the TAB putting on a bet, or drinking a few pints - he'd come home late for tea and not long before we had to leave. A merry sentimental tipsy old man who wanted to 'jitterbug'. He collapsed and died in his kitchen some years ago now. My cousin, his oldest son refused to let them take his body away and the police had to step in to help. My aunt misses him every day.

The twins have a couple of our close friends that they occasionally refer to as 'uncle' although technically they are not. It is more as a sign of respect and to show the close relationship these men have with our family. Their godfather for example who Hannah just loves. I never had that. Mum and Dad pretty much kept to themselves and the family when we were growing up.

They also have Phil's brother who lives in Melbourne and my SILs husband in Sydney. Then there are my sisters husbands who live in Brisbane. But one of the uncles who stand out in our family - is the uncle of my nieces and nephews - Miles. He is my brotherinlaw's brother. His brother married Phil's sister if that makes sense. He and his father have become regular features at family gatherings over the years and for a period of time he lived with my SIL and his brother and their kids.
He is a lovely man. The kids adore him. He plays with them, riles them up and brings them the most ridiculous presents which they just love. He is kind and gentle with them too - and also very sweet with Hannah and Kit. Just 2 weeks ago we had a family gathering to celebrate the January birthdays and he was there - as usual. Playing video games with the kids, chatting with the adults, swimming with the family. Then we went down south for a week at the beach. A few days after we got back - just last Thursday in fact, he was bushwalking and had a heart attack. His girlfriend knows CPR and kept him breathing - luckily a helicopter was there to rescue someone with a broken leg - once they were contacted they assisted Miles. But still he had been unconscious and not breathing for around 30 minutes - the damage was done. Tonight the plan is to take him off the respirators, and let him go. It is heartbreaking and shocking. So quickly - so unexpected. My poor SIL and BIL - they had so much on last year I was really hoping that 2011 would be a much better year for them - it isn't starting out that way at all.
So as I write this I say a prayer and pay tribute to a wonderful man who is a great uncle and who soon will not be with us. I hope his passing is painless and pray for strength for the family he leaves behind. God speed Uncle Miles and look after his loved ones left behind.

School starts

2011-01-30T21:04:00.001-08:00

The twins went back to school today. the year 1 room is up a level - so an extra flight of stairs fro Hannah to deal with. The 2 Year 1 classes are also more separate so Kit is in a different class. Still I think they had a good day. Hannah looks exhausted. She told me she wanted to lie down and watch tv when I picked them up.

Random Acts in the Garden

2011-01-26T02:32:00.001-08:00

I got yet another treat this week. By chance my MIL had a spare ticket to a matinee at the Ensemble. The ENsemble is a small theatre on the north side of town, near Luna Park. It was a one man show - by the 'dentist' from Mother and Son (Heaven help me I still can't remember the guy's name other than Harry!). Anyways - it was a lovely trail of vignettes - began with a speech from King Lear to his daughters, traversed the issues of racism, global warming and what is is to be an actor. In part of it he spoke of Dustin Hoffman in Tootsie - and so began my interest in DH - so on the trip home I decided that we'd have a Dustin Festival in the Dock. Do you know how many good movies that man has been in? I haven't seen them all, there are a number that I have heard of and not seen (like All the President's Men). So the first movies off the rink (depending upon availability at our local video store are :The Graduate, Kramer v Kramer, Tootsie and Death of a Salesman. THen I googled and the list at least doubled! We watched The Graduate last night - and it was great - better than I remembered - funny, arty, quirky... and it lead us to sit up late playing S&G records - which has to be a good thing. And then there is Willy and Biff, "a man is not a piece of fruit". I haven't seen that for years - certainly not since I had Hannah and learned about Danny Miller...
While I was at the theatre, Phil took the twins to a garden centre to revamp our vege patch. When I got home they planted their treasures...

Beach Holiday

2011-01-25T00:35:00.001-08:00

We went down the south coast for a week. We'd rented a holiday house across the road from the beach with 2 other families.

The first day we arrived at our holiday house was a gloriously sunny afternoon. We hurried down to the beach. The twins raced into the water - all was peaceful and fresh. Phil was pulling Hannah along the waters edge on her new skim disk and she was loving it when she lost her balance and went face first into the hard sand. One of her top front baby teeth was knocked out. Once we realised we raced to get it back but the sea ate it up. Little brat was quite shaken so I carried her back to the house for the clean up. Her father was feeling very bad but it is just one of those things. The tooth net tot he lost one was wobbly. We hoped that it would not follow suit. It seemed as if it wasn't that wobbly - it would be touch and go...
Possums came up on deck at night searching for snacks

Kit learned to catch a wave on his boogieboard
Hannah found this green sack and turned into a caterpillar
This bream was caught and cooked for dinner
We saw dolphins swimming past
We went on bush walks and played at the park.

There was beach cricket, boy races the length of the beach, hermit crab races and noughts and crosses to play on the beach. Hannah made a million cakes and raced me into the waves over and over again...
Late one afternoon, a few hours after she'd had a chocolate icecream, Hannah lost another tooth...my girl is very gummy now - she comes at you mouth wide with excitement and al you can see is pink gum!
We played board games: family trivia; the Margaret and David Movie Game (I was Margaret!); Uno; Pairs (or memory game) Bookworm (on ipad/ipod); MarioKart (DS) and Hannah's favourite - Thomas Snakes and Ladders.
This is simply a random photo I took on our last day. One of the things that struck me watching the people on the beach and in the water was how colourful everything is at the beach. Maybe it is cos I am so used to living in the city where black is the go with everything colour preference. People at the beach had a rag tag collection of pieces - often mismatched but somehow they work against the tawny green backdrop of the national park and the sandy white colour of the beach and the waves. GThere were flashes of pink, green and orange, striped red and white beach umbrellas and yellow buckets and spades. A rainbow of colours...
When we got home I felt tired but refreshed - cleaned out the kitchen cupboards from top to bottom as I put away the leftover holiday goods. The kids played with their toys and pottered about. Finally I popped down to our local shops. Hannah had been asking to go tot he shops for quite a while so I took her with me. Sometimes I think the only reason she wants to come tot he shops with me is to have a sleep - and sleep she did. She was knackered!
The next day I went in search of the lego that Hannah had been demanding to buy with the cash from the tooth fairy. I couldn't afford the $100+ airplane that she wanted but I did find this seaplane. She and I made it together - it is a great little kit.

Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard

2011-01-24T12:27:00.000-08:00

Fremantle Press : Books : Greater Expectations: Living with Down syndrome in the 21st century by Jan Gothard

What a fantastic title for a book about people with Down Syndrome and their families in the 21st century. There is a sample chapter if you follow the link - which includes references to stalking (something that I can definitely relate to!lol) Can't wait to read it all....

Stalker

2011-01-24T01:49:00.001-08:00

Can you see the little figure in white in the photo above? Well that is a little fellow who's Mum I was stalking - he is nearly 4 and his family was holidaying near ours down south. One of my friends came back to the house and commented that they'd seen a little boy with DS down at the beach. they'd chatted but not about the DS - she said she didn't know how to broach the subject so chatted about other things - like the whether and wetsuits. My advice - was to go for it - just say something about the redheaded brat that we have 'back at the house' on this occasion - and go from there. Especially if the little fellow was as young as she thought (18 -24 months). Of course he was older ... our kids have access to the fountain of youthful good looks - lucky them!
Anyways there is no stopping a special needs Mama on a hunt and surely enough I found them - and had a lovely chat to his Mum. He sure was a cutie.

It Begins with Awareness.

2011-01-14T13:24:00.000-08:00

It Begins with Awareness.

I love Kelle's blog. I visit regularly though I rarely comment - she gets so many comments already - because her Enjoying the Small Things is just so beautiful. This link is rated TE - Tissues Essential. The only thing I'd add is something that a good friend of mine has reiterated over and over as we searched for a school for Hannah - a point now that I think I have actually started to really and truly accept (as opposed to sort of accepting). Our kids - are gifts - not just to us (I knew that!) but to the communities we share them with. When I send my most precious and vulnerable daughter out into the world I do so knowing that she is strong, her spirit bright and her gifts enormous. I have learnt to trust that others will accept the responsibility of looking after this gift - just as I as Hannah's Mum have learned to.

I posted in Mainstream Musings just the other day a Review of our first year of formal schooling. In it I mentioned a letter, written in Hannah's voice, that went out to every family in the school. It was in many ways our family's offering - our gift tot he families of the school, the opportunity of welcoming Hannah into their lives. With that gift comes responsibilities. They have risen to the call with generosity of spirit and openness of hearts. They enjoy it. Yes I think there are plenty of people in our area who would agree that they have been blessed with my redheaded brat. It was me who had to learn to trust a bit more.

I should also add that given the devastation of floods here - I am not posting this link in Aus as a call to donate (although if anyone wants to go for it!) but simply cos the message from Kelle and all the people in it are a gift - a gift that is too hard to refuse.

Waiting

2011-01-13T18:48:00.000-08:00

The waiting Charm Princess
Last week when Kit had sleepover at his cousins Hannah waited impatiently at our front door waiting for her father to come home. She and the poodle made such a tragic pair that I videoed them. A couple of nights ago while I was making dinner Hannah started insisting that she wanted to go to Nan and Pop's for dinner now. We arranged for her to do so the very next day. Her Nan would pick her up and then one of us go get her. Well she was beside herself with excitement most of the day. I had totally forgotten that she had a ST session that morning - lucky it was a home visit one! At first she was quite thrown and saying "No, Hannah .. Nan and Pop's house". Once she realised she would still be going to her grandparents later on she was more compliant. My MIL rang to say she would be here in about an hour. To fill in the time Hannah got ready in stages: dress; shoes; hair like the heroine in Cloudy With a Chance of Meatballs;
shoes (again)...and then I couldn't think of much else to distract her with so she waited at the door....

Diversity

2011-01-10T13:10:00.000-08:00

I'm a diversity junkie - I love it. Like everything though it comes with challenges...the front page of my paper had me close to tears as I stared at the person int he red vest - out in raging flood waters trying to save people's lives in Toowoomba. The article mentioned a semitruck driver who parked his truck so that a car was prevented from washing away and he threw a rope to the female driver of the car so she could get to safety - such human acts of heroism always move me - I think that humans are totally awesome.
Then on page 3 a coroners inquest into the drowning of a little girl with Rett syndrome. The question being considered is whether her death was accidental or deliberate. The father is quoted as having said to a DoCS worker "I can't cope with it," "We are two hippies living in a house, playing guitar. This is out of range." The child was going into foster care but the drowning incident happened a week before. I'm not suggesting the parents were involved in her death - that is up to the coroners court(!) - and I think that they did the best thing if that was their reaction by placing the child in foster care - giving her a chance to having some loving carers...but I can't help but feel sad at the contrast between the front page action and the third page attitude...life is rarely simple...

For Cate

2011-01-10T02:05:00.000-08:00

Cate at I don't Know What to Say has a post about technologies and children - in particular ipodtouches and youtube. I totally understand her concerns. Phil and I are at the moment trying to decide what are reasonable boundaries to set for the twins with regards to all this technology. Hannah loves her ipod - especially in the car or if she is out visiting. She makes cakes on it or watches Hi5 videos. Other than that she doesn't seem to want to go on the computer much - she used to go to dora games and Daniel Cook but hasn't asked for them much since I moved the computers into the spare room and out of the living area. She got gov't funding for an ipad but mostly watches dvds on it and not often (school term hasn't started here yet!). I write notes on it - a record of the 'lessons' Hannah and I do together over the holiday break.
Kit got a DSi when han got her ipodtouch (twins and birthdays can get very expensive!). He didn't seem to use it too much. Mostly he made flipnotes on it rather than play games. He got a couple more games and has had friends and relatives with theirs so is playing more games on it now (plus it's holidays here..so he has more free time than usual.)
Christmas brought him a Wii - he was using it for what I would consider a 'reasonable amount' given our holiday at home status - maybe an hour a day? He only has 2 games - Mariokart and Wiisports - he plays Wii sports with Hannah or his father or friends if they call over. But then Phil hired a Ben 10 Wii thing - the bane of our existence - he is obsessed with moving up levels on it - and it isn't easy for him so he cajoles his father into helping and then I have 2 badtempered males to deal with!(lol). I'll be glad when it goes back to the video shop - not one I'm in ahurry to buy - but who knows what 'party dad' will do...
Anyway - last week we had a great day up at Pearl Beach - the only time the brats had technology was on the drive home (it takes a bit over an hour) - the photoes above are from that journey - and for Cate. Cate - when you come up with a prototype for handling this one - I'd love some tips!
Just today a friend visited with her 2 kids (who also got a Wii for Christmas) - and one of them had lost their new DSi over the past couple of weeks - I'd be ropable - but at the same time - you give a 6 year old the technology but we wouldn't give the the key to their house would we?
It is one of the issues I am a bit concerned about with Hannah's ipad at school too - I don't want the teacher to have to take on an extra responsibility for the piece of equipment but of course she will have to won't she? after all Hannah is only 6...We will have a meeting where we discuss the rules of it's usage and how to keep it safe - but still with the benefits of these gadgets comes responsibilities and new problems...

Childminding

2011-01-06T14:34:00.000-08:00

I had to go into work for the day this week. Kit has been dying to have a sleepover at his cousins place so I organised it to coincide with my working day. Hannah clearly told us that she did not want a sleepover there. So alternative arrangements were made for little brat. The night without Kit she thought she was Christmas - sitting up between her father and I for movie night. We had popcorn (as she demanded) then I made us a mushroom tart and finally hannah insisted on making dessert - so she served us strawberries and icecream with a jelly snake on top. At first she chose Ben 10 for movie night but I put my foot down on that one and once she realised I was serious she changed her choice to Bee Movie which was fine by me.
After the movie she negotiated to sleep in our bed - with me - with 'Daddy, my bedroom" as the little bugger said. Once we were all settled for the night - we slept in until 8.15 the next day - unheard of when Kit is in residence when 7.30 is a great sleep-in!!

The next day I had arranged for my girlfriend's daughter (who is 14 now!) and Hannah's best friend to come and look after her for me. Well R arrived at 8.30 ready to go and Hannah was just as excited to have her friend all to herself. She was quite keen for me to leave them to it. R's mum was home sick - later that day when I was chatting to her she told me this story:

Karen rang the house to see how R and Hannah were going. Hannah answered the phone with 'Hello'. My friend said "Hi Hannah it is Aunty Karen here. Is R there?" to which apparently little brat said "yes". My friend then asked to speak with her daughter. Hannah then said quite clearly "No we are playing." and - hung up!!! The little horror. My friend said she then rang back and this time spoke a bit more firmly - with a "Hi, it's Aunty Karen here. Can you get R for me?" to which the evil child said "no" and hung up again!! At which point my friend rang her daughter on the mobile. Our chat was about how clear her speech was in the conversation more than the naughtiness of the behaviour... which I have to say I thought was very funny. Naughty sure but also very funny - maybe that's what the red hair can be blamed for....

Still the day was a success and I think R will agree to mind the little bugger again for us should the need arise.

Work

2011-01-04T13:42:00.001-08:00

Another fashion moment complete with mismatched socks.
Hannah has been initiating 'work' to get ready for Year one since NYE. Each session lasts from 10-25 minutes long. It is great to see her so keen to learn. She uses a slant board for writing and sometimes for her drawing:
At the beach with her family on a sunny day.
When Phil and Kit were cooking, little brat didn't want to be left out - she helped chop and prepare the sauce and roll some gnocchi too...
Kit still loves the idea of junior masterchef. He chose this recipe of Isabella's to cook for dinner ... with help from his father.
The finished product looked a lot like the picture in the Masterchef junior cookbookIt was delicious!

Art Gallery

2011-01-03T01:08:00.001-08:00

Phil often says to me that I should 'go out' (mostly cos he often does!) but I don't really like going out at night that much - but today I agreed that he could drop me in at the art gallery and I'd bus it home - planning a whole afternoon just on my own to replenish my spirit of self. It was great (even though we realised midway through that he actually had a bbq to go to that same afternoon!). it just meant that I lingered at the art gallery and didn't also walk into the city to a cafe for a cuppa and a bit of browsing. That didn't worry me because the main reason I went was to see the exhibition 'art and soul' - and it was worth it - so much so that I went fro broke and bought the tv series dvd that goes with it as well.
The first emperor is exhibiting at the art gallery - queues were very long to get in - I simply went to browse at the shop while I was waiting to get picked up - and couldn't resist buying this paper-cut. Still when people ask me about twins or if someone says 'double trouble' I am ready to counter with the saying given to me by a Chinese woman I used to work with - said at t a time when my pregnancy was pretty stressful - it was a welcome relief to hear her describe it as 'double happiness' - so when I saw this even though I couldn't really afford it - I bought it. Isn't it beautiful?

Kit loved the warrior excavation kit i got him - he very carefully unburied an infantryman.

Pearly

2011-01-03T01:01:00.001-08:00

Fantastic Sea Creatures of Sydney

2010-12-29T22:57:00.001-08:00

Setting out with Sally for a day at Sydney Aquarium
Kit did not believe that this was made out of Lego - he had to go up to it and see more closely
Lego Shark
Cheeky
Reflection
A pose for Mum
Hannah and Turtle

I saw a lot of this:
Penguin
Octopus

With the Mermaid

Stingray
Fish
Dugong

Shark

Whale Tail

Lego Art
It was the first 'big day' where we didn't take a stroller for little brat. She coped very well. GOt carried on her Dad's shoulders a little and I carried her a bit too but overall she walked it. On the bus on the way home Kit fell asleep, she fell asleep and then DH nodded off too (not that he'll admit it!). When we got to our stop we managed to wake Hannah up and she walked all the way home - Kit was a different story and poor Phil had to carry him - all the way! This is one of her 'up!' photoes...
So as if dinner out last night wasn't enough - today the brats had lunch in a cafe in the QVB.
And now it is NYE and I have friends coming over for a BBQ and no idea what to cook Happy New Year!

Christmas chaos

2010-12-29T13:12:00.001-08:00

One of my nieces - just cos she's adorable.
Waking Grandpa up on Christmas morning. The poor man had driven all the way from Brisbane the day before and then sat up with Phil and I till midnight the night before. Still I don't think he minded the brats jumping on him at 6am - it was Christmas after all!
Pretty in Pink - Kit got Hannah the pink ball for Christmas which she loved. She got him a diary and a big green pen which he loves.
Lunch with the family was lots of fun - as usual. Baby C must surely be Hannah's favourite cousin - she just loves her.
Gra got her the bubble gun - Santa the dancing tutu
The brats got a couple of shared gifts. I still like to see them share so beautifully.
Still more presents - just as well DH wants spoilt kids!
Christmas day was nice and hot so included a water fight in the yard with Hannah and Kit's 'guns' from Santa.
I LOVE what Santa got me for Christmas
Dad was back in residence for Christmas. Hannah and Kit were very pleased to have 'gra' back in residence. I hope he comes back early in the new year.
This must rank as the best present the twins have ever got. Mum and Dad bought it for them for their birthday about 3 years ago - they both love it - but it has been Kit's saviour on many occasion. When he is tired or overwrought or just in need of letting out an 'energy surge' off he goes to centre himself and simply be and jump - in his own world of sensation. He regularly plays a bit in the house and then takes himself out for a jump, then comes in and plays some more before going back out to that trampoline... we love it!
Kit's cousin from QLD slept over they had an absolute ball. I did feel a bit sorry for Hannah who was pretty much totally excluded from their play - not that she seemed to mind too much. I did have a go at her cousin once when she tried to say something to him and cos he couldn't understand he totally ignored her - I simply said to him that Hannah was talking to him and that he should at least acknowledge that by looking at her and saying something simple like 'Hi Hannah'. Then she wanted a go on the trampoline and they stopped her - when we intervened they went to just get off rather than do what normally happens here and the bigger kids sit down and watch while Hannah has her 'turn'.She had a good couple of days though lots of tv, independent play and time on her own with her parents.
I have done some baking over the break - some more successful than others. APart from the fact that the innards of my peppermint crisp look more blue than green this caramel pie turned out pretty well.
Friends bought the twins gellibaff for Christmas. Kit wouldn't be in it but Hannah gave it a go.
We went to this park on the Bay hoping the breeze off the water would help us achieve liftoff with the twins' new kites - we did a little...
After playing at the local park this afternoon Kit is keen to go out for dinner - so we are splashing out and going to our favourite local Italian restaurant...delicious.
Hannah still loves to swing - I have her whole lifetime recorded on the swings I reckon - might have to try and make a photo collage for her of it one day.
Objects of beauty but I love the feet that fills 'em more!
Kit in the light...yum!
Hannah on the play equipment

This bay is about a ten minute walk from our house and even though it has been very damaged by industrial activities over the years (I can almost see the 3headed fish from the Simpsons swim by) it provides a beautiful view and atmosphere and even a patch of clean sand for the twins to play in. I love living near water - it is so calming...
They do tend to have more separate play activities these days but they always spend some time playing together - like today at the pathetic patch of sand on the bay near where we live. I love seeing the two heads together in collusion
Flinging sand back into the bay
Hannah and her Dad trying to get the kite she got for Christmas to fly

Technology and ear piercings

2010-12-23T02:23:00.000-08:00

Good News - we got our FAF $$ to buy hannah an ipad. The letter came today and DH was out the door to buy it this afternoon. She was so pleased when he got it home. Kept saying "Hannah has TWO ipods! Not Kit" Kit for his part was his usual fantastic self. I did explain to him later that the government had paid for the ipad - it was to help Hannah in Year 1. He didn't once wonder at why she got it and not him. We agreed that it could be used by everyone during the holidays but come school time - it is to help Hannah with all her Year 1 work (the ipod touch we got her for her birthday is for 'play') and any movies or such things will be taken off it. Kit was keen to look up ibooks for 'appropriate ones for Hannah' and 'one for me too!'
I remember when I got my ears peirced. It was 1976 (?) in Brisbane and they'd just started using the 'gun' so Mum and I went in to get ours done. My sisters had already had theirs done using the needle. I recall a fantastic day of mother - daughter closeness and sunshine. When we got back to our house we found out that my great-grandmother had died. (no mobile phones so we only found out when we got home) It marked the day forever in my memory because my Mum was so upset at losing her grandmother. Anyways let's just say that I am glad to have got through the day of Hannah's earpeircing.
Finally today Hannah got her ears pierced. SInce she was about 3 she'd play with my earrings and ask to have her own done too. I'd always smile and reply "When you are 6" thinking that that day was YEARS away! This year when she was asking my SIL volunteered to take her. HEr own daughter needed hers done - she would do both. I said so long as I didn't have to be anywhere near at the time and if she fainted - I wasn't to be told! And so the deal was struck. Today we trekked out west to get Hannah's ears pierced. Se was so excited it was gorgeous. I sat outside at a cafe. Didn't go anywhere near the beautician. Hannah came running out full of smiles and clutching a candy cane - so I can only say it went well. My SIL had the numbing spray and antiseptic spray - so different to in my day! in hand for me. Hannah chose red stones. very sweet. I wonder if my SIL will also taker her for her first tattoo - they are much more common now too...