Saturday, June 22, 2013


I am sitting with Kit at a local Bakery whiling away the time until his first ATOD exam - that's ballet. Hannah has gone to her piano lesson with her Dad. It's a cold wet and wintry day in Sydney. 
Kit decided he'd like to try ballet after volunteering for a year with Hannah's dance group (the one for children, teens and adults with disabilities). He loved it - the studio and ballet. With lots of stuff already on his schedule I found a ballet class that was on at the same day & time as Hannah's. he loves it. He dances down the street every week after his class. When they said he should try for this exam he was happy to and when they suggests a few weeks of attending an extra class he was happy to do so. Now the extra class will end but he has been invited to join their performance group next term - and has agreed to - so we are back at twice a week for his ballet. Lucky he likes it. I'm such a novice - I saw a couple of events with the Australian Ballet that I thought might be a treat for him. A boys morning and a proper performance. Hannah would love that too but I don't know how she'd cope at a full scale gig and they are pretty expensive, little did I realise they also sell out like hot cakes! I've missed the boy gig which is a shame but his Nan and I will take him to La Syphalides. I hope he enjoys it. To be continued

Saturday, May 25, 2013


Stella Young wrote a wonderful piece for abc ramp up - unfortunately I can't link it from my mobile but it is worth googling. Worth googling because what she says is worth considering deeply. I find myself agreeing with her but at the same time I find myself admiring her - for her courage and her intellect. I admire my sister and my daughter too. They are inspirational to me and part of that is related to their disability. Yes it could have been something else that life threw at them but it wasn't. It was the rejection and loneliness and isolation that can come from disability. I see them scale walls on a regular basis and am so in awe. I also appreciate Stella's slap over the wrists, the walls are ones we help build. They are no more or less valuable as humans cos they 'inspire the nondisabled' but I am allowed to feel very sentimental about all their life story, including the bits related to disability, cos they are part of my family and I love them.
FYI google 'disability porn abc ramp up'

Tuesday, May 21, 2013

Music and Down Syndrome

I think it is time to write about music - and Down Syndrome. I have tried googling it at different times but have not ever found information to help me decide on how best to approach music and Hannah. I know people like Sujeet Desai are very talented musicians - but I am wondering how to harness Hannah's interest in music as an 8 year old girl.

It all started in the home of course. As toddlers she and her brother loved music. They were surrounded by it. We had a tall cd shelf that Phil had made and every afternoon they'd get into it - Phil would come home to find the bottom shelves empty and cds strewn around our loungeroom floor. Wiggles dvds were acceptable 'quiet entertainment'. In some ways it was like living in a musical - Phil and/or I would burst into some silly song on a whim - and change the lyrics to include our babies or the activities we were doing. Our first use of the advent calendar I quilted with my mum so long ago now included 'song sheet' days - where we'd get out our Christmas themed puppets and sing whatever carol was listed on that day's slip of paper. Even that first Christmas - the one spent not at home with our family celebrating the wonder of our first babies - but pacing up and down secluded rooms at Westmead Children's Hospital - found me singing quietly such classics as "I'm Sticking with You (cos I'm made out of glue)" by the Velvet Underground and Rudolph the Red nosed Reindeer - well they were my two favourites cos I remembered a lot of the words and Kit seemed to like 'em. The twins were about 3 months old. By the time he was 18 months Kit had 'call and response' down pat. Someone would sing "Mamaaaa" and he'd go "oohoohohoo" ala Bohemian Raphsody.

As they grew the music stayed - we acquired a 'music box' filled with child friendly instruments - like a zylaphone, rattles and shakers and drums etc. I have wonderful video clips of them making music and of Kit stomping about singing/shouting to Justine Clark's "WATERMELON". Favourite sleeptime music was John Coltrane's A Love Supreme and Elvis' Hunk o Burning Love. In the car it was the same story. I had a steady mix of kids favourites that I'd play and sing along with. Hannah's EI received a grant from the golden stave foundation and employed a music therapist. We were very fortunate to be able to give Hannah the opportunity for music therapy sessions for a semester. They'd sing and interact and play the drums. She had a blast. She was maybe about 2 years old then.

The grant ended and we moved house. At the same time Phil started playing guitar in a 'work band' - the Thomcats. They played at work Christmas parties and a couple of times at the local pub. One such gig was at a Marrickville Hotel on a Sunday afternoon - so I took the twins along to watch. There is a photo on my sidebar of them both strumming guitars whilst standing on a guitar case - that was them pretending it was  a stage and they were performing hits like Big Red Car.

Without music therapy I was looking for other ways to enjoy my time at home with the twins - I was working 3 days a week by then. I used to walk them up to Leichhardt regularly for an outing and a trip to the park. One day there was a woman sitting at a desk in the middle of the shopping centre there. She had signs up about her music school - a franchise of International School of Music (or ISM). They had a class for 2 year olds called Jitterbugs and another for 3 year olds called Beeboppers and then junior Pianorama classes ....etc I approached her to ask about jitterbugs. She was very friendly. When I wondered if Hannah would like it - I asked her how she thought she'd go. I don't remember the specifics of our conversation but the essence of it and the genuineness of her tone stays with me. She basically said that she didn't know how Hannah would go because she didn't know anything about Down Syndrome but she had had a couple of students with autism before and they had been ok so why not give it a try? Her attitude was so down to earth. I signed them up.

It was soon clear that Hannah was in fact one of the best students in the class! All the singing and actions and signing of EI were a real advantage to music lessons, plus the fact that the little brat simply LOVED it. I'd put on the jitterbug cd at home and we'd sing and dance around to the songs doing all the actions together. Because I had two babies and the classes involved parent-child activities the teacher would often partner Kit. She got to know my children very well. We had the same success with Beeboppers. Both kids loved it. Then we began the next stage - the one that included piano work. Hannah still loved it. She was learning but at a slower rate than her peers. She and Kit used to draw up their own music sheets for fun. I have a whole stash of their compositions. They would draw 'tahn, tahn, shush' etc - coloured dots and sticks dancing across a page.

When they were about 3 Hannah's EI received another Golden Stave Grant - this one was used to fund a group music therapy session. It was more structured and came with a cd Sing and Grow Together - a QLD program. It was fantastic and the twins loved it. It is where I first met the lollipop drum - an absolute favourite of mine. The twins also liked the rainbow shakers. The cd was on high rotation in my car and we'd sing our favourites together.

Kit continued to progress through the levels at ISM - in fact he is sitting for his first AMEB examination this year - in theory. Hannah repeated a year. She still enjoyed it but I didn't know if she'd be happy to do it again for a third time. Besides by then she was at school. I had to push her to learn her sight words and do her readers for homework etc I wasn't prepared to add in compulsory piano practice. It was time to move on. I made the decision freely with her best interests at heart but it still hurt. It was a clear example of something she wasn't able to do 'because she has Down Syndrome'. ISM had been a big part of my 'support in the mainstream'. In fact her music teacher in kindy had found that Hannah was quite good at some of the activities - because she had been exposed to similar tasks at ISM. When she had her last lesson there, I cried. And bought her teacher a little gift to say 'thanks'. It was time to try her out in a dance class...another foray into the 'mainstream world' and a post for another time.

Once when hannah might have been 4 or 5 I took her to the dentist. Afterwards when we got to the car she was talking to me and her speech was quite unclear but I was so impressed that she was trying to say such a long utterance that I persisted in trying to work out just what she was saying. She was patient with me and by adding in actions to match her words I eventually worked out she was saying 'scratching at my door'..her first song request was for a Kasey Chambers song - Rattlin' Bones. I was so excited. We played that song over and over all the way home. Nowadays it is still one of the cds in the ca but Hannah is more likely to request Poor Adeline or Jackson Hole and I am much better at understanding what she is saying - her speech has made lovely progress.  Night time or sleep music progressed to where Hannah would request Wiggle Bay, and then just a couple of years ago she started asking for The Lark Ascending by Vaughn Williams - a classical piece. Her speech continued to improve but her singing is tragic. In the past year or so she has started to sing along with her favourite songs - it is like the 2 cats of Kilkenny - a total caterwauling cacophony.

Her dance class is Musical Theatre - and so she is encouraged to use her voice - which is wonderful  except that she runs all the words together and frequently leaves off beginning or end sounds or may not even clearly know what the words are so simply sounds out something that doesn't resemble  music or voice at all. Her favourite songs for this are "How Bad, How Bad Can I be?' from the Lorax and 'Stick to the Status Quo' from HSMusical. She is quite partial to the lovesong from the movie Bolt too.

Simultaneously to all this, as I was wondering about harnessing this interest in her speech sessions,  Hannah began lobbying for Piano lessons. She kept asking me to get her old music book out because she wanted to play her piano lesson etc and for the first time ever there were times when Hannah resisted going with her new ST for sessions. This is highly unusual as the sessions are at school and 1:1 and being easier for her she is happy to go - just like the OT which she started with this year too.  Her first ST was an absolute angel who had worked with Hannah since she was 2 weeks old. When the time came for her to move us on to a ST who focussed more on school aged children - it was a wrench for us all - but especially for Hannah. Part of me wondered if this reluctance was her way of protesting the loss of her old speechie. I was worried about the money we were paying for a 30 minute session each week - the cost is a struggle and so results are imperative. Maybe a compromise worth considering would be dropping ST to once a fortnight and adding in a music lesson.

But where was I to find a music teacher for a child with Down Syndrome? I recall reading a memoir many years ago about a family from Sydney and their daughter with DS received piano lessons in the family home using the 'suzuki' method...or failing that maybe I would be lucky enough to find a music therapist in our area? I emailed a couple of studios that offer piano tuition. I am the sort of parent who likes to let them know up front that Hannah has a disability. I consider it important to developing a partnership - an honest start. It has served me well in the past - except for one dance school that said Hannah wouldn't cope with their lessons (such rubbish but their loss) and in this case neither school replied to my email...not a good sign for inclusion. I did find a music therapist nearby who replied promptly but unfortunately she was only available quite late in the evenings which wouldn't suit Hannah.

So one afternoon after Kit's lesson I spoke to his teacher. I was really just wondering if she knew of anyone - a student teacher or such that might be able to come to our house and play piano with Hannah - maybe help her sing a couple of popular songs - and not expect her to practice. She thought about my question - and said that really the only person she knew who might have the skills I was looking for was herself - not that she has any therapist training or knowledge of special education but that she might be able to do what I was looking for. We agreed upon a trial lesson. Hannah's mouth was wide open with excitement (it still is every lesson!) and her eyes focussed in concentration - she LOVED it!!
And so I have signed her up for weekly lessons. Being private tuition they are hideously expensive but where that money used to pay for 30 minutes of ST it now pays for 2 weeks of 30 minute music lessons.

Hannah is enthusiastic and even though part of the deal was that I would not be making her practice - I haven't had to - she wants to practice. Her teacher has been awesome and really thought about how to structure the lessons to meet our individual goals and also incorporate into it the same program that she uses with her beginning piano students. A drum has been added in to enable greater practice/repetition of rhythms etc Hannah sings 'lah, lah, lah' to twinkle twinkle little star - and does so with greater awareness of her own voice. Last week she played the piano and when her teacher stopped naming the notes to play for her she switched and was using the recorded cd playing to work out aurally which note she was up to...marvellous stuff indeed. I don't know how long this will engage her interest but she is learning so much and enjoying every bit of it. It is wonderful to watch. Her teacher is determined to find a way to include her in the annual concert even if she is only ready to perform the most basic of tunes. Exciting times indeed. And so if I google 'music and down syndrome' I probably still won't find a comprehensive guidemap but as Hannah, her music teacher and I go along, feeling our way on this journey perhaps that is not such a bad thing. We are finding our own way along this path,  we follow Hannah's lead and don't set limits on our expectations. What could be better than that?

Sunday, May 19, 2013

Hadron Colliders

Hadron Colliders at Petersham
so the DH and one of the dads from school are in a band...and they played at our old stamping ground - the place where the 'shams' was born.... I thought of naming this blog 'shambles' cos that is what my life often seems like - but decided to be ambitious and go for a play on the 'hamptons' which so rumour tells me is much more ambitious!

Tuesday, March 05, 2013

Born this way

Born This Way

Click on the link above - and I hope it takes you to a youtube clip that I just LOVE! I have watched it a few times already today - cos I just enjoy it so much.

March 21 is World Down Syndrome Day. Last year on a  whim I wrote a fb post - and then felt a bit trapped into writing one each day up until the 21st... it was fun but also required a bit of time and thought as to what I could say and how I should say it. THis year I found myself feeling guilty. Committed families were putting up posts and I was still dithering around as to what to do. In the end I opted for organising an early dinner with another family that we are friends with - whose daughter is absolutely Hannah's favourite person in the whole wide world...and some picture postcards that I have put up on fb.... One of which already had the "Born this way" quote on it....

This video clip is all I really would want to say for this year's WDSD. I guess that I am lucky enough at the moment to feel how totally 'normal' our lives are and hence I was struggling a bit with what to do to mark WDSD - because I absolutely believe that it is an important day to celebrate and advocate for inclusion for people with DS.

I might think of more to add before the 21st but for now - if you haven't seen this on fb - please check it out - it is awesome fun.

Friday, March 01, 2013

Sewing and School

Things have been going rather well in the Dock although I do get a bit tired of the rain....
I am working 5 (short) days a week this year - after working 3 long days for 7 is actually working rather well. Work is more manageable, I can do pick ups and drop offs which is great and Mon-Wed I take the twins to the library to work on their homework which is having a positive effect on their learning. The worst part is trying to work out when and how I can vacuum and mop my floors - especially as the weekends have tended to be quite wet.
Ready for Year 3...they are in the same class again this year with a teacher who is new to the school.
 Hannah is coming along in leaps and bounds - she is keen to be seen as 'grown up' and for the first time is happy to work independently on her worksheets for periods of time. It is a great start for her.
 She is as ever very keen on her dancing and attends a mainstream dance class as well as a class for children with a disability. She loves and is coping with both. Here are two of her new dance outfits.

As well as that Kit has taken up ballet. He loved helping out at Hannah's class for children with disability so much last year that this year we decided to enrol him in a ballet class of his own. Unfortunately it means he can't volunteer at the moment as there is only so many days in the week! Still he is loving it and I hope that one day he will be able to volunteer again.. he gets so much out of it.
He is loving it. His class is on 15 minutes before Hannah's - they are 1 suburb apart - so I race to Kit's lesson - where they both change out of their school uniform and into their dance clothes and then I drive Hannah to her lesson, drive back to get Kit and then he and I go back for the last part of Hannah's is a little manic but usually there is at least 5 minutes to spare at critical points in the itinerary so it works and is better than having to fill another afternoon with an external activity.
It is the only time that I get a little twinge - as I take Kit to his 'regular' class, where he is one of only 2 or 3 boys surrounded by all these fluttering princess fairies in their dance costumes that I then have to leave to take Hannah to her 'special' dance class.
I don't mind - she attends a mainstream class too - just not that one. And the class for special needs is fantastic and I want her to be able to go and enjoy herself - somewhere SHE is catered for - where SHE is the 'norm'...still I always get a 'feeling' about it...I wonder if my parents felt it when they would drop my sister at the school for Deaf and Blind and myself and my oldest sister at our school?
Hmmm it isn't a big deal and yet it is a 'deal'. It is something we have to consider -  I am very happy to have Hannah spend time in settings that are specifically designed to cater for special needs -  as I know how important it was for my sister to develop ties and bonds with the hearing impaired community (or 'deafies' as she refers to them). I also see how important it is to provide her with a range of environments. To see what she can do. For years I used to hope she'd say she was done with her mainstream dance class but every year she'd say she wanted to go back and her teacher would say how happy he was to have her - and then last year I saw it. I finally 'got it'. She is progressing and learning so much as part of that class. She is 'coping', in fact I rather think she is thriving. You just don't always know what is going to work do you? And so I have my beautiful dancing twins....
This week saw us back again for another IEP meeting - it was productive, positive and enjoyable. Her new teacher is working out a treat. Goals are set that address her social and academic needs. We have found a rhythm that is working. I have a principal who is committed...I consider us to be very lucky because without the best resources (funding enables approx 1 hour a day of support for Hannah) you really are relying on rabbits out of hats or lots of dedication!
A 'selfie' for school...
Our weekends have been pretty relaxed. We took the brats into Chinatown for the start of Chinese New Year.

 Eating those noodles...

Valentine's day was quite close to the Lunar New Year.....
 so as part of our Valentine's feast of Japanese - Hannah worked out how to use chopsticks by herself - a skill that Kit is still to master. We were very proud of her!
One day I went on an excursion to Taronga Zoo with my students so I offered for the twins to come with me. Initially they both said that they'd go to school as usual but on the morning Hannah was up bright and early and said that she wanted to come. Here she is with one of the worksheets that our students do. Ready for work:

 My favourite- the flying fox...or fruit bat:
One positive of all this rain on the weekends has been the time to do some patchwork:
 I am loving my Saffron Craig fabrics - so pretty!

And when the rain stops, towards the end of the week - there is the possibility of a reward for all of our efforts:

Thursday, February 07, 2013


look what arrived in yesterday's post. Now I am really ready to start piecing my 'seasons' quilt for my online course. I hope these rulers are easy to use.

Monday, February 04, 2013

sampler quilt

As part of my 'my time' initiative I have signed up for an online class with Punch with Judy. First set of blocks have begun - the class is for use with Westalee rulers - and I don't have have any of those (yet) so just sorted my stash and had a go at the first 2 blocks.
My stash. ready to go

Tuesday, January 22, 2013

Snow Country

After visiting the nation's capital we drove down to skiing territory to meet up with another family from the kids's school. We stayed there for a week - by the last day there were 20 kids, 7 couples. It was a very fun and relaxing time. Plenty of exercise and activity for thrillseekers as well as space for some laying about relaxing in the lodge admiring the beautiful scenery of the grassy skislopes.

Hannah found it a bit overwhelming/tiring but was a total trooper as usual - I think she had a lot of fun - she didn't climb to the summit of Mt Kosiosko, the highest place on the continent above sea level but she explored the bushtracks, did some drawing, interacted with a whole bunch of kids and went swimming a couple of times. She has really made some strides - you should have seen her on the play equipment at Questacon and then at the local park near where we were staying. She was so proud of herself too the little brat. It is wonderful watching her confidence grow.
Sculpture walk - Dancing

 Finding the right track
 The tallest boy in Australia
 beauty of the bush
 It was windy on the summit walk
 Reflections in the duck pond
 Flying Fox - finally mastered
 climbing skills
 I conned Kit into accompanying me on a walk one afternoon. We admired the beautiful colours that we saw
 and this gorgeous gold - which had lined the road down too
 At the top

 this is the slide at the pool that Hannah loved going on with her father

 One of my pretties from my solitary walk
 The pool slide - internal shot
 more 'selfies'
It was a lovely holiday. It almost felt like being overseas again because we did so many things we don't usually do on our typical January beach cost more too!!!!!