Tuesday, August 30, 2011

What have we been doing?



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

Monday, August 15, 2011

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

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.

Sunday, August 07, 2011

Craft and cooking Bugs

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.

Tuesday, July 26, 2011

Technology





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

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.