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!