You can see the conference here.
We were fortunate this year to attend the Having a Say Conference in Geelong and I was quite unprepared for the scope, the reach and the number of people who attend this event each year. It truly is a celebration of lives lived with difference and dignity. We attended with the crew from Parent to Parent and Allycia loved evey minute of this event. She participated in workshops, contributing to the Banner Art project, a mini olympics, a number of performances and we stepped out to the Red Faces Night at a local night club. The event culminated with a Flower Power themed Dinner and Dance at the Pier - 700 of us danced till we could dance no more. A number of guest speakers and organisations attended and several Art Prizes were awarded for outstanding work. Open mic sessions enable any and all attendees who wished to speak to take the stage and voice their opinions about many different facets of living with disability. The National Disability Insurance Scheme Tribe were there and distributed placards and T shirts to encourage solidarity and commitment in ensuring progress towards the Scheme maintains its momentum. Inspirational comes to mind when I think about the philosophy that underpins this conference however my challenge comes now as I embrace a young woman who has really taken to this idea of independence.....Yikes am I ready? Well I just need to be - Allycia has been inspired to think about how she might like to live her life, her way - complete with a discussion of the decor of her place when she feels she is ready to leave home and be independent - purple walls, red trim and black stars.........she has style!
You can see the conference here.
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![]() Woodford Folk Festival Allycia adds another bow to her repertoire - potter extraordinaire! We had an amazing time at the festival this year. The highlight for me was working alongside a wonderful group of volunteers with gifted visual artists as they ran workshops in our area - "Artisania" - for hundreds over the week long festival. People who had never drawn or painted before created original works, weaving, sculpting, making glass beads, weaving with palms - way too many to name and wonderful people to work with. I think I might like to attend as a visitor and do the workshops myself next year. Allycia's highlight was dancing with the Asanti Dancers until midnight until we welcomed 2012 in! ![]() Melissa, the visual arts coordinator, and I and her beautiful babe at the front of the Artisania Welcome Tent. There are so many things to love about Woodford, the people, the music, the creativity, the warmth, the location, the energy and the safety. One of the loveliest things for me that probably enhances my experience is that it is a safe place for Allycia. She can roam around, dance, be inquisitive. laugh and play. I never feel like someone is going to take advantage of her and that the kindness and care that abounds in this place enables her to be free to explore without fear. ![]() Our Inaugural Chromosome 18 Christmas Party was a ton of fun catching up with the old and meeting the new. We gathered at New Farm Park and were visited by some special guests. It was a stroke of luck for us to happen upon a local dog owner who brought his handfuls of fun out for the day. Needless to say there were some sad faces when we had to say good bye - thankfully the owner explained they weren't quite old enough to be finding new homes. One of our Mum's Monica has declared this to be our annual event so we'll need to think of something to top the puppies who absolutely made our day. The laughter and the sharing reminded me of how much we have to be grateful for. Without the courage of our region's Marlene Brightwell seeking out Jannine Cody all those years ago, we wouldn't have access to the knowledge, care and community that is only a tap of the keyboard away. Lookng forward to our Australian Conference in 2013 and just a little sad that the US and European conferences aren't on our travel itinerary this year. Our European Families are celebrating all things Chromosome 18 in Milan.....I am happy to admit I am just a little jealous of you all over there! A footnote: I have been getting a little bored with my photo layouts so thought I would add some spice to my life with this Photofunia: Photobooth App! I may be a little more adventurous in the future. ![]() The end of year concert with Allycia's Fitness and Dance classes from Caloundra Studio was spectacular. Allycia had a a ball and looked at home up there on the stage. I just happened to notice that star above her head.......just sayin! ![]() Just love watching this kid have a ball - FAD did a great job this year with the costumes and lighting. Aunty Julie was our photographer extraordinaire and captured these great moments of the girl in action. ![]() A quieter Christmas moment for Allycia and I when we visited one of our little local churches collecting for a campaign to combat hunger and lack of water in Africa. The space was beautiful and peaceful. Allycia asked the chaplain a few questions and wandered around looking at the various displays and posters. This poster captures what the season means to me - it really is all about love. Intangible, untouchable, invisible, indescribable but we know when it's here and we sense so very deeply when it is not. ![]() Allycia's final piece for the year - her interpretation of an alien and you guessed it - the theme behind this piece is about love and about family, friends and loved ones. It was her Uncle Geoff who asked her to critique the work for us and she blew us away. The main colours of red and purple are her favourites, she talked about how she made it and then explained the significance of the golden dots. Each dot represented a family member or a significant person in her life - beautiful. ![]() Allycia together with her Girl Guide Buddies participated in the Day for Daniel the Maleny Guides hosted. It was a great day and a worthwhile charity to contribute to and raise awareness about child safety. ![]() We were fortunate to catch up with one of Allycia's favourite people, Rick Guidotti following his presentation at the Brisbane Powerhouse for The Society For the Study oF Behavioural Phenotypes, Endeavour Foundation and Mater Medical Research Institute's Celebrating Diversity and Rick's Photographic Works, normalising and celebrating people of genetic difference. This man just makes you smile being around him! ![]() Some of our beautiful Chromosome 18 families came together to celebrate who we are at the beautiful Flaxton Gardens on the Sunshine Coast Hinterland. The food was great but the company was outstanding. There is nothing so fulfilling than spending time with people who honour the dignity in every human being the way our families do! |
AuthorsVeronica and Allycia share some thoughts, ideas and happenings - we'd love to hear some of yours...... Archives
December 2014
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