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18q- A different kind of normal

One year on......

6/15/2013

Well it's been a year since our last post and I feel like I am in the confessional! I took some time on the long, wet, week-end to take stock of the last year, perplexed at where the time has gone, so decided to track back. We've been a little busy having clocked up over 33000 kilometres with trips away from home since June last year. Time to take a walk down memory lane......

A week end with Kristina

6/15/2013

This year has already brought some wonderful moments. Allycia and Kristina and I share a love of dance - they can dance and I am an outstanding observer. Kristina and I shared a wonderful evening in Sydney at the Capitol when The Paris Opera Ballet performed Giselle earlier in the year. We had a mother and daughter week end away and were treated by one of my life long friends Leona, to a film on the Sydney Harbour. With this being Kristina's first time in Sydney this was the best introduction to one of Australia's iconic landmarks.

One of the challenges we faced as a sole parent family with Allycia's additional needs was finding one on one time with each other. The week-end Kristina and I shared was an opportunity to be a little selfish with one another.

New Caledonia, Handicapable and The Isle of Pines

6/15/2013

We had the privilege of presenting at the Handicapable Conference held in Mont-Dore, New Caledonia. An amazing delegation from Tahiti also presented at the week long celebration of disability along with many gifted and talented New Caledonians. Whenever we had time in between our commitments, guitars, music and dancing "just happened". The week was filled with arts, craft, performance, learning and sharing, with the last day bringing the children of a local primary school to the conference for a day of sports activities and a celebration of gifts and talents from an incredibly diverse group of performing artists. We travelled with two friends - Allycia's "Best Buddy" Effie (tour guide extraordinaire) and teacher and performer, Florence. Her energy and passion for the performing arts and facilitating opportunities for people living with disability is infectious. We were grateful for her French speaking background, given our rather limited capacity for the language. Our lack in this area didn't stop Allycia - her love of life and delight in meeting new people ensured we were able to overcome language ridden boundaries and celebrate the cross cultural triumphs and challenges that living with a disability brings. One of the things I have loved most about our life since Allycia arrived, is the lack of façade we encounter when we come together with others in not only our local community, but our global community. Living with intellectual disability from our perspective means that what you see is what you get - one word for this - refreshing.

Allycia performing on stage

Two amazing brothers rapping and dancing together

Allycia with the Mayor of Mont-Dore and other local government officials.

Following the busy Semaine Handicapable, we took time out at the Isle of Pines and did some true holiday making stuff! We were able to experience new sights, foods and of course meet new people. The most spectacular was the Atoll de Nokanhui - difficult to capture the beauty of this amazing "strip" in the middle of the ocean but we grabbed a couple of shots as mementos.

Family Milestones

6/15/2013

Kristina and Nik became engaged after what we can describe as a very long term courtship. After eight years Nik surprised Kristina with a dinner, a proposal and a ring in a very romantic European setting. The thing I love about these two is the respect they show one another and the love of family they each have. The bigger news of course, eclipsing the engagement was Nik's discovery of a Justin Bieber toothbrush which means that every morning and every night I hear Baby Baby Baby. Go on I know you want one too!!!

Allycia had many highlights during the last twelve months, but I think her most memorable was her Debut. The night really did have a magical touch for me as I watched this beautiful young lady blossom as she danced the Pride of Erin with her partner, the dashing young man, Mark. With her big brother Adam taking to the floor and waltzing her (as much of a waltz as he could muster) we, as family, delighted in the many little miracles that have brought us all this far. Like so many of our family occasions, it is the pre event that sets the tone and the Debut was no exception to the rule. Our hairdresser extraordinaire, Jen not only styled Allycia's hair to perfection, she hosted our wild bunch, working away while we feasted on nibblies and bubbles!

An extract from Kahlil Gibran's Prophet

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.

You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Adam achieved another of his goals within his Military Career and gave me pause to revisit these older photos of he and Sarah following his first graduation. As each of the children have stepped forward and forged
their own path, I am grateful for the words of The Prophet that were shared with me many years ago. I can't remember who gave the book to me, but it is for me, a comprehensive guide for living, loving and thought.

My big milestone of the year was the official celebration of the thesis being done and dusted. I had some of the most loved people in my life share the ceremony with me. The sharing of this moment once again reminded me of how much richer life is when shared with those we love, admire and trust. It was also a time to reflect with much gratitude the many, many hands that contributed to the work in the PhD. We were incredibly fortunate to have as our guest speaker conductor, Simone Young - a truly remarkable and accomplished woman whose philosophy, built upon the Gustav Mahler quote carried on her website - "Tradition is the handing on of the flame, not the worship of the ashes" was inspiring. My friend, my confidante, my sister, Julie took some great pics that will be treasured for a very long time.

February - Having a Say in Geelong!

6/12/2012

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.

January at Woodford

6/12/2012

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.

November and December.........

6/12/2012

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.

October in Review

6/11/2012

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!

June July August September - Busy Times

10/7/2011

Time has flown and the last few months have been hectic but great! Allycia has truly embraced her 16 year old status and begun exploring some new areas of interest as we look towards her future. She has been participating in some work experience at the Maleny Library, has thoroughly enjoyed her time there and will continue to visit on a regular basis. Allycia has had a love for reading and books since she was able to pick one up and delights in the places her imagination takes her.

The 16th birthday was a great success with around 70 of the many special friends and family who have shared our lives thus far sharing the night. We ran out of seats meaning four of us ending up sitting on milk crates - a lot of fun was had with the highlight being a birthday cake with an image of Allycia and Justin Bieber from her Aunty Karen and Uncle Reg.
July came and went just as quickly with me now moving into a full time position with my work with General Practice Regional Training Provider, CSQTC. I have been with them for for a number of years and with the program I work with experiencing unprecedented growth, there has been a need to step up the hours. I think I will be needing an extra day in our week to keep doing all the things we love!!

Dancing performances once again were a highlight as Allycia strutted her stuff at the Maleny State High School Art Expo evening. She sported a fabulous black wig and fishnets and danced a burlesque number with her Year 10 class with style and attitude. Allycia's artwork was also on display and I managed to grab this snap of her self portrait that was on display.

August was a big month with Allycia and I attending the Be Inspired Conference hosted by Parent to Parent, a not for profit group committed to supporting and advocating for people and families living with disability. Here I showcased our film, discussed my research and Allycia performed both a solo dance piece and a performance piece with her Drama Group, The Sunshine Troupe. The Troupe's performance was a great success culminating in bringing the conference attendees to their feet dancing to Nutbush City Limits. Good Friend Nat Brunovs joined us at the Conference to capture some inspiration shots of the some two hundred people who attended. Allycia and two of her troupe buddies, Michaela and Sophie weren't going to miss out! Filmmaker Glenn Wilkinson was able to grab some great footage of their performance for the documentary we're making about the Troupe, their lives and their achievements. The film has now been granted approval from the Documentary Australia Foundation so the Troupe and Glenn and I have some fun times ahead!

September is the birthday month in our family so is always busy! Big sister and oldest daughter Kristina celebrated her birthday with the instant party crowd that is our family. Allycia was keen to sport the dress up hats and dance with the belly dancer as was her big sister! The fun and laughter just kept coming and I am so often reminded of the rich lives we have in the company of our family and friends.

Julie and Lydia with Kristina and Allycia celebrating Kristina's Birthday in fine style at Ahmet's Turkish Restaurant at Southbank

April and May have been and gone - June already - the month of the 16 year old.......

6/16/2011

Time moves quickly in the blogosphere and our commitment to writing monthly is already on very shaky ground. April was a busy month work wise with some community project work with some Queensland Officeworks stores for the Sydney based Ready to Roll Production Company. It's a great initiative where Officeworks staff contribute to their local communities in various fund raising and awareness raising activities, then go on to make a video of their achievements to be presented at the annual conference.

April also saw Easter and Anzac Day come and go as we found ourselves in beautiful Byron Bay with some of our family. The Blues Festival and seeing Bob Dylan were a highlight but there's no such thing as a free lunch in this life.....the trade off was taking Allycia to see Justin Bieber's film "Never say never" - Bieber Fever has hit our front door.

May saw Allycia complete some more of her challenges with Girl Guides with a strong focus on discovering all things Australian as well as turning her eyes to the heavens and learning a little more about the solar system. Speaking of which, how about that eclipse this week......
planet earth and her surrounds continue to create their own spectacle and drama, but can hardly compete with Allycia's drama group of course her weekly sessions with her peers keeps on delivering a lot of fun and laughter. My drama included some interesting personal health issues that have slowed me down just a little (ok a lot) but are now subsiding. We had some wonderful help from friends and family as well as support from a local organisation - The Blackall Range Care Group. Nothing can be traded for care, concern and love given with such generosity - so thank you for so much of all that good stuff.......

As we head into June each year I often find myself reflecting upon the previous years with such gratitude in knowing that Allycia has continued to grow and become stronger and more resilient. The rest of our family will vouch for the those tears that seem to flow when the 25th comes around and with this being our sixteenth year there will undoubtedly be a few more tears (and champagne - me, coke zero - Allycia) flowing. We have 45 coming to join us at The Purple Olive for dinner so cannot wait to celebrate........