<![CDATA[     18q- A different kind of normal     - V & A's Blog]]>Mon, 21 Dec 2015 08:01:15 -0800Weebly<![CDATA[Allycia's latest newsletter]]>Thu, 11 Dec 2014 13:22:32 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/allycias-latest-newsletter
I’ve had a big few months with lots of performing and some very special family celebrations. Here’s some
of the highlights of my latest escapades!

Tina & Nik’s Wedding
We’d all been looking forward to this day for so long and I couldn’t wait for the wedding to begin. Tina
was very calm on the day and she looked so beautiful! I loved my dress and Nik said I was a fantastic
bridesmaid because I was so helpful and patient. I loved that the bridesmaids got to walk into the
Reception to the music from ‘The Fast and the Furious’ and I had some pretty impressive moves on the
dance floor when the Serbian music started. I also made an exceptional speech at the Reception where
I spoke about how much I love Nik and Tina and I wished them lots of happiness for the future. I think
they’re both enjoying being Mr and Mrs Jankovic.

Drama Workshop
In the September holidays I was lucky enough to be asked by Florence Teillet, my TAFE teacher and director of The Death Factor, to attend a two day drama workshop in Maryborough. Not only did I get to participate in the games, but I also was paid to work as a Drama Assistant. My job was to make sure the games were running smoothly and help to organise the participants. My favourite game was called "Touch the Colour". You had to dance to the music and when it stopped touch something of the colour called out but NOT on the person next to you.  I can't wait for another opportunity like this one.
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Baden Powell Award
On Sunday 9th November I attended a ceremony to receive the Baden Powell Award for Girl Guides. The Baden Powell award is all about challenging myself to do my best, setting goals and achieving them. To achieve the award I had to earn a Silver Endeavor Badge and show a PowerPoint presentation about my travels to New Caledonia. It was a bit of a challenge but I got there in the end with Mums help. I’m the only one in my group who has it which is a wonderful achievement.


The Death Factor
For Halloween this year I was part of the SCCITR Project “The Death Factor”. We performed to a full house and there were fortune tellers, Bridezillas as well as many other acts. No doubt many of you have seen the photos of us all in costume and I hope they weren’t too scary for you. I was Maleficient, just like Angelina Jolie’s character, and I looked pretty amazing thanks to the skills of Makeup Artist Kathy Walker. A highlight of the day was performing our own version of ‘We Will Rock You’ entitled ‘We Will Chop You’ with The Outsiders. To sum up the experience in a word I would say it was AWESOME and I can’t wait for Death Factor 2015. I’m thinking a pirate theme would work well. This is the Facebook page for our band https://www.facebook.com/TheOutsiders909

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I loved playing Malificent in our Theatre Restaurant Production and had a great time at an event that we were able to volunteer at -  Aussie World.  It was a fantastic experience for the twelve of us to go and be part of the team of street performers.  We were also very proud to have our Troupe become one of the members of the Sunshine Coast Theatre Alliance and are looking forward to being involved with them next year.

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TAFE Production
Our next TAFE Production for this Semester was “The Mystery Cruise”. I played one of the Curry Girls dancers and we were sort of like the Pussycat Dolls. Our performance were on Friday 28th November at Nambour Special School and Friday 5th December at Nambour TAFE.  The Special School performance is important because we perform for the younger children and we hope that they will follow in our footsteps one day and perform as we do.  The performance at the TAFE is a also a special one as our family and friends come and share in our achievements for the Semester. We put in a lot of work this year and Florence worked hard with us. 

Mum’s Trip
So my incredible Mum has been on a trip to Prague for her work and her stay in Paris on the way home. I was lucky enough to stay with Aunty Mary and Uncle Geoff. I had a great time although I  missed my Mum a bit…okay a lot! I spoke to her heaps and saw lots of photos, she even sent me one of a Maleficent Poster she saw in Czech!   Here I am showing her my best moves.

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<![CDATA[Allycia and Aunty Julie - the next instalment]]>Wed, 27 Aug 2014 11:34:38 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/allycia-and-aunty-julie-the-next-instalmentAunty Jules and I had to do the newsletter the old fashioned way  this month as skype was not working. Lucky we had the loud speaker so that I  could talk and Jules could type.  There seems to have been a lot happening  the last couple of months and hopefully I’ve remembered most of the big things.

My 19th Birthday
I  was lucky that the last  Circle of Strength meeting was just after my birthday, so we got to have more birthday celebrations.  We had yummy cheesecake and took some fun photos…I especially liked the  one of Lydia photo bombing me and Amanda.  Thanks for the pressies everyone.

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Kristina’s Hens Party
Well this would have to be the biggest event on the schedule for the last couple of months.  It was lots of fun to be with family and friends to help celebrate Kristina’s Hens Party. I saw lots of people I hadn’t seen for ages. All the bridesmaids were there at the Bacchus High Tea, we had scones and cakes and I had a coke. I felt pretty special there and I got to wear a black dress, high heels, and had a Bridesmaid sash so everyone knew I was one of the bridesmaids. It was great to see everyone.  It really made me start to get excited for the wedding, not long to go now.

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Strictly Ballroom
In July Mum and I went to Sydney with our dear friends Allison and Michaela. Although we had to go there for a Chromosome 18 Committee Meeting, the real reason was to go to see the Strictly Ballroom stage show. Strictly Ballroom was epic!!! The acting and dancing was amazing.  It was so great to share this experience with Michaela.  Mum and I stayed with Adam and Sarah and Doris the rabbit.  Michaela and Alison stayed at a hotel.


Outsiders Update
My band The Outsiders have performed again. We played at the Kawana Pub and it was a half hour set. It was awesome and I love it.  I sang one song called the Outsider Blues. We have written our own lyrics for this song. I play the marimbas for the other songs. We also performed at the end of semester at TAFE. When are we next performing you ask? on 11 October we will be performing at Fair Day Out in Eumundi and 31 October is when we will be performing with the SCCITR Project Production. More information will come soon.  This is our Facebook page https://www.facebook.com/TheOutsiders909

Sunshine Troupe Happenings 
On  2 August the Sunshine Troupe had a big 3 hour rehearsal for our first performance as part of the Sunshine Coast Community Inclusive Theatre Restaurant  (SCCITR) which is happening on 31 October.  We rehearsed some dances.   It was fun and I am so looking forward to the first live performance. I
have no nerves at all cos I’m too cool for school.  
This  is our Facebook page https://www.facebook.com/groups/124268750938698/
Gramps’ Visits in June and August 
G
ramps stayed with  us and helped mum and I out in June/July which was great. He couldn’t help himself but had to come back again in August. He got very ill while he was here the second time but he still managed to take care of me.  He took me to the Ginger Factory and we had a visit to Michaela’s place. 


Florence’s Performance
In July we went to Florence’s performance of  ‘She Walks Beside His Shoes’ which was in Brisbane. It was really good and I’m glad we were able to show our support for her. 

My TAFE Routine
TAFE is going ok this term and I’m going 4 days a week.  Monday is teaching art with Craig. Wednesday I’m learning music, Thursday it’s art, and Friday it’s drama. Tuesdays are when I go to Blackall Range Care and do a few activities, including lawn bowls, ten pin bowling and croquet.  
Thanks everyone for your time and help 
Love and Hugs
Allycia (Mrs Bieber) xxxx







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<![CDATA[Allycia and Aunty Julie's Newsletter Blog]]>Fri, 13 Jun 2014 01:45:22 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/allycia-and-aunty-julies-newsletter-blogLots has happened since my last newsletter. Aunty Jules and I  caught up on skype this month to write the newsletter together, which worked out  pretty well. I think I’ve remembered most of the major things that have happened  over the last couple of months.  PictureOur band, The Outsiders on the front page of the newspaper

Battle of the Bands 

I had such an awesome experience playing the marimbas with my other bands members from "The Outsiders" at the Battle of the Bands competition in May.  Along with Matt, Corey, Ruben, Nick and Graham, we battled it out against 5 other bands, to win the Best Band!!
 


We played 2 songs, "Don’t Give Up" and "Show   Me the Way". We won $200 for Best Band, and Matt won $200 for best vocalist. The next performance of "The Outsiders" is on my birthday, 25 June at  Nambour TAFE.

PictureThe three musketeers!

Michaela’s 21st Birthday Party 

My friend Michaela celebrated her 21st birthday and my other friend
Mitch and I were honoured to give a speech at her family dinner. It was a great  party at the Loose Goose at Twin Waters. We had good food and I made good choices and didn’t drink any alcohol. That’s a photo of me, Micky and Mitch at  the party .

PictureThree of my favourite peeps at Adam and Sarah's engagement party.

 

Adam & Sarah’s Engagement Party 

It was exciting to be at the engagement party of my brother Adam and my future sister in law, Sarah in April. It was held at the Victoria Park Golf Complex in Brisbane. The highlight for me was being with my family and catching  up with all of Adam’s mates. I wish Adam and Sarah a wonderful life together. 



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High Tea at Customs House 

The day after the engagement party, I went to Customs House in the city for a  girly High Tea. We had a very yummy time there with Mum, Kristina, Lydia, and  Aunties Mary, Karen, Maggie, and Jules.


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State of Origin – GO QUEENSLANDERS!! 

I made mum watch the first State of Origin with me. And mum says this was a  huge sacrifice (I don’t think she fancies football all that much…I think she  must be adopted). I, on the other hand, love watching NSW get their bums kicked  by Qld. Unfortunately that didn’t happen this time, but watch out Blues, the
Maroons have got the next game.


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The Disneyland Dream 

This will be a regular feature to help keep me motivated for my trip to
Disneyland. The savings are going well and thanks to my travel champions, Aunty  Anne and Aunty Alison, they have given me a few more ideas for the trip. These  include visits to Universal studios, seeing the sights of LA, Hollywood and the  pier at Santa Monica, and the San Diego Zoo.


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One Direction here we come 
Yippee…thanks to Michaela’s mum, Michaela and I are going to see One  Direction in February next year. I am so lucky.  

Some Shopping
A couple of weeks ago we went to Eumundi Markets with Aunty Mary and then last weekend Aunty Mary visited again to take me shopping for my early birthday present. I was thrilled to get a new dress, necklace, earrings and most of all  my first pair of shoes with heels!! I got this all to wear at Kristina’s Hens Party which is coming up in August. I’m so excited. Thank you Aunty Mary! 

Drama and Art Update 
I’ve been having a ball in drama class and am enjoying being part of the SCCITR project. The Sunshine Troupe has been working with some new and different people and we are looking forward to a lot more fun.  I had another painting session with Kristina. Also, Aunty Karen, who came to visit us on the long weekend, has commissioned me to do a painting of my Mum. Mmmmm this will be interesting!  
Thanks everyone for your time and help 
Love and Hugs 
Allycia (Mrs Bieber) xxxx
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<![CDATA[Our Circle of Strength]]>Tue, 22 Apr 2014 02:42:27 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/our-circle-of-strength
Last year we began our Circle of Support which we have renamed our Circle of Strength.  The photo above is from that first meeting and we have now been hosting, with the help of friends and family, a meeting every second month.  It is hardly a new concept and quite honestly, one that I wished I had embraced much, much earlier.  A great outline of the circle's purpose can be found on the Mamre site. The acceptance of living interdependently as opposed to an elusive independently has been difficult but necessary as I have surrendered to the knowledge that Allycia's life long well being will be achieved by the quality of the relationships that are opened up to her and cannot be achieved by my efforts in isolation.  We are tremendously fortunate to be surrounded by the love of many and the future feels a whole lot safer with many possibilities now that we have reached out and allowed some of our fears and vulnerabilities become a little more apparent.  Phew....letting go -  easy to say, and should be so easy to do, given the relief that comes with it, but it takes some time .........maybe I am just a slow learner!! One of our goals has been for Allycia to be supported in creating a bimonthly newsletter.  We have decided to publish the most recent one here, which has been co-edited with Aunty Julie who has kept us on track with our meetings!!!  She is one of our strengths for sure!!!

Allycia's Newsletter - April 2014

PictureMaleny Guides and our Guiding Light Fun when I received my Guiding Name - Rainbow Warrior
I  have had a very busy time since our last meeting and I am looking forward to  seeing everyone soon.  Thank you to my Aunty Julie for keeping everything going and making me do my  newsletter!
 
I  have been on two Girl Guide Camps and have been awarded my Assistant Leader Badge with my Guiding Name Rainbow Warrior. The first camp was at Mon Repos and was fabulous.  I got to see turtles and  went to the Bundaberg Ginger Factory. 

I bought six bottles of Ginger Beer. There was pink grapefruit, normal,  lime and passionfruit.  I went to  Kindilan on the last week end in March.   I got to go canoeing and camped in a tent.   It was awesome.

TAFE  has been very busy.  Lots of drawing and painting for me.   We are doing a play for Drama and we are performing at the Battle of the Bands at Tewantin with my music class.   Sunshine Coast Community Inclusive Theatre Restaurant (SCCITR) of which I am a part, had its first intensive workshop. I loved it because we did lots of skits and lots of games. And I laughed so much. It was good to work with Florence and Craig again. I’m looking forward to being involved in more workshops through the year.  
PictureMichaela and Chris!!


I went to have my first official stay at the Caloundra Getaway – a new experience  for me.  Michaela and I stayed at  Gramps and Gran’s Unit with our friend Chris.  Chris is a qualified teacher who decided to come and stay with us for a few days to help us get better at doing things as individuals. 




I learned I could wash up on my own, I cooked my own dinner –rissoles with cheese and pizza sauce, swept the floor and made my bed. Chris took us to the Caloundra RSL for dinner one night.  Both Michaela  and I had to check that the unit was locked up when we went out, and had to let ourselves in as well.  The new  thing I learned at the Caloundra Getaway was how to wash dishes and I will certainly be practising this new skill at home with my dear Mum. 

PictureMy Catwoman Mask from Movie World


Over the holidays I have had sleep overs with Aunty Mary and Uncle Geoff, Freya and  my sister, Kristina. Thank you for taking good care of me.  Freya and I watched Alvin and the Chipmunks and her Dad, Chris took us to  MovieWorld. I went on the Scooby Coaster, Wild West Falls and the Roadrunner. I  watched two shows:  Batman and  Marilyn Monroe, so I was lucky.  I  screamed on the rollercoaster and the Wild West Falls because I was going to get wet.  My Catwoman face is one that I learned from my good friend Martha!


During my sleepover at Kristina’s house, we continued work on our mermaid painting.  We are using mixed media for the painting. I’m learning a lot from Kristina about different art techniques.  I had my first full day working with Jen at Jeneration Hair.  I spent a lot of time cleaning and Jen said I was awesome.  I am looking forward to going back on Tuesdays.  I have started back at Fitness and Dance and am enjoying this a lot.  This year I am in the Jazz and Hip Hop dance groups. In Jazz we are dancing to Tim O Matic’s Parachute.
PictureThe cast of Car Pool.


Mum and I went to the West End Film Festival to see the screening of mum’s short film ‘Car Pool’. We caught up with Tfer and Michael there.  I was excited to see Mum’s film on the big screen.

PictureMy cousin Lydia and me over Easter

Probably the highlight of the last two months has been the Easter weekend, when lots of my family visited Mum and I at Flaxton. Kristina, Nik, Adam and Sarah all stayed over during the weekend. Aunty Mary and Uncle Geoff came up for a day to visit.  Aunty Jules and Lydia had a sleep over on Sunday night and we watched the Hunger Games films.  I had lots of fun in the Easter Egg hunt on Sunday and got lots of chocolates of course. It was so nice having my awesome family around me. I am so  lucky.  The  next two months are sure to be just as action packed with lots to look forward to. Stay tuned for the next exciting instalment!  
Thank  you very much for your time and help
Love and Hugs
Allycia   (Mrs Bieber) xxxx


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<![CDATA[Formally FInished with Allycia's Fabulousness.....]]>Sat, 15 Mar 2014 22:57:48 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/formally-finished-with-allycias-fabulousnessPicture
Of the many events we managed to fit into the final months of 2013, this one was probably my favourite for so many reasons, not the least of which was that beautiful girl's exuberence! I recall the many instances of grieving I experienced in the early years following the dire outlook we were given for Allycia's future. 
I remember the years when little progress seemed to be made and wondering how she might navigate her teen years and what sort of joy she might expect in her life when we were overcome with medical procedures and the anxiety of not quite knowing what we were up against and whether she would survive. 
It would be easy to look back upon those times and minimise those emotions, to say to others facing similiar circumstances, "Keep positive and don't worry about the future"- or "It will all work out," as was often said to me. I don't know that as parents that we ever quite rest in everything being all right with any of our children, and perhaps to a greater extent, our children who experience life somewhat differently to others.  There are days, weeks, months and sometimes years, when we cannot see our way clear.  A recent article I came across echoes some of our experiences although as life has progressed, Allycia and I have greater access to one another than many families living with autism. "It will be all right" takes the support of many people that uphold us when we falter.  It takes dogged determination to not accept the lesser expectations that others constantly throw our way.  Nothing comes without a changing of priorities when we realise that those given to us, have to matter more than we do sometimes, often times.  Now, that we have arrived here, momentarily, I cannot articulate the exquisite moment of joy I felt when this young woman, written off by some, bursting with confidence, threw her hands to the sky and celebrated being free to be herself and that  I get to be there for the ride!!

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Two sisters shining brightly and sharing the night.
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<![CDATA[The end of one year leading into the next]]>Sat, 15 Mar 2014 22:05:46 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/the-end-of-one-year-leading-into-the-nextPicture
Allycia's five years at Maleny State High School culminated in the end of year Graduation and Awards Ceremony where she received the Community Service Award.  We moved to Maleny to make a new home for ourselves and begin the High School chapter of Allycia's life.  It was a risk to make the move and be a little further away from the life we had built in Brisbane, but it has been a rewarding time, watching her grow and become part of a school community where we were able to enjoy the generosity of educators committed to her learning and moving as and when we needed to, to meet Allycia's particular needs. We accessed specialised education supports alongside Frances Kildey and Cheryl Farley - two unique women with a wealth of knowledge, experience and intuition.  Allycia's Dance Teacher, the incomparable Cath Grey modified the theory side of the curriculum so that Allycia could continue to do Dance as a Board Subject and complete five years alongside her peers.   There is little doubt in my mind that without the advocacy and passion these three women surrounded Alllycia with, that she would have been able to achieve as well as she did, nor had nearly as much fun.  I managed to catch "The Award Moment" here on my phone.

PictureFlowers, cards and our mascot PINC
I too had a farewell towards the end of 2013 saying goodbye to CSQTC (now GPTQ) after six years with the team.  Beautiful flowers and words from my valued colleagues left me pretty teary and grateful to have enjoyed many milestones and achievements as part of a team dedicated to delivering quality education and training to Junior Doctors and General Practice Registrars.  In Australia our GPs are our front line and often times our life line when it comes to the particular needs of our children.  We look to them for guidance and advice and when we find our "right fit" we build partnerships over a lifetime in the care of our most vulnerable.  I have met some mighty individuals along the way and see a future filled with hope when I have seen first hand, the calibre and quality of the GP Supervisors teaching the next generation and the commitment and passion of new emerging practitioners.

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<![CDATA[Shining with the Sunshine Troupe with a "Wedding"]]>Sat, 15 Mar 2014 21:03:54 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/shining-with-the-sunshine-troupe-with-a-wedding
It was a huge finish in 2013 with so much happening in Allycia's sphere. One of the many highlights for her was the Sunshine Troupe Inc's end of year performance of "The Wedding" in Buderim.  The Troupe worked incredibly hard to perfect their performance and played to a crowd of 200 at the Buderim War Memorial Hall.  These guys love a crowd and the crowd loved them.  The Maleny Girl Guides provided our catering service and the Troupe's team of Mothers worked hard as well.  The lovely Mother and Daughter team, Leanne and Lauren from Fitness and Dance on the Sunshine Coast handled our choreography and make up for the performance.  It was quite a feat to turn around the modest production in 10 months so Allycia was incredibly proud of herself and her fellow performers. We are looking forward to an exciting 2014 as we move the group towards inclusive theatre work with our local community.  Can't wait!!
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<![CDATA[The Australasian Chromosome 18 Catch Up]]>Sat, 15 Mar 2014 12:16:28 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/the-australasian-chromosome-18-catch-upAugust 2013 was an amazing month for us - catching up with old friends and meeting some new ones.  The connections and bonds that our gatherings create are unique to families who share this walk alongside one another as we create new opportunities for our children who live lives with a difference.   Jannine Cody and Dan Hale once again visited our shores, sharing the work and research that continues in the USA.  Allycia caught up with the lovely Elizabeth, Erin, Kathryn and Martin as well as her Queensland Chromosome 18 buddies.  One of our favourite sessions was Genevieve Clay-Smith's showcasing of some remarkable films she has been creating, most particularly The Interviewer.  Genevieve's venture, Bus Stop Films is a pioneering organisation which has a focus on creating inclusion within the film industry and the teams she has brought together are commanding some serious attention with their films garnering well deserved attention and awards.

Allycia, alongside some of her peers also presented during the course of our two day program. Each of the speakers shared stories of their lives, including the triumphs and the challenges,  with each inspiring us to continue into our futures with a positive outlook.  One of our favourite speakers was Tim who had the room in stitches as he recounted how he and his Mother, Mary,  have triumphed over her recent
health challenges.  Tim was born with a difference on the 18th Chromosome, and has been a member of Toastmasters for many years.  His eloquence and delivery were amazing.

Our Australian Coordinators Marlene and Scott once again did an outstanding job of bringing us all together to celebrate who we have become and what our young people have achieved in their lives against odds too great to fathom.  Gratitude knows no bounds when you travel with such a courageous group of parents who do not falter in their roles as  advocates and children who are simply busy getting on with the business of living full lives.

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Allycia with two of the other amazing presenters at our Australasian Catch Up - Bus Stop Films' Genevieve Clay-Smith and Dr Dan Hale from the USA.
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<![CDATA[The many faces of brother and sisterly love.]]>Sat, 15 Mar 2014 11:30:12 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/the-many-faces-of-brother-and-sisterly-love
I never tire of the delight of sharing life with three exquisite individuals who happened to be lent to me for a time. These photos of two of the three always bring a smile and the gentle whisper of moments that have become cherished memories.
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<![CDATA[A monster of an 18th Birthday]]>Sat, 15 Mar 2014 10:29:25 GMThttp://www.18q-adifferentkindofnormal.com/v--as-blog/a-monster-of-an-18th-birthdayPicture

On the 25th of June I celebrated my  18th birthday. The theme
was Monster High and I told all of my family members to dress up.  During the day  I baked a cake with my sister Kristina and my sister in law to be, Sarah.  We made a chocolate MMs and  Kit Kat cake. In the evening Kristina, Nik, Adam, Sarah, Uncle Geoff, Aunty  Mary, Lydia, Aunty Julie, Brett, Gran and of course my Mum celebrated by birthday.



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The Cake we made for my Birthday
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My Mum, brother Adam and my Aunty Julie
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Turning 18 meant I was able to vote for the first time which was very exciting.  Mum and I went to the voting booth together and here I am


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