Nicki Fry

Hello my name is Nicki Fry and I would like to tell you about some exciting things that have happened for me this year.

Firstly my friend Taryn that I have known since we were both about 2 years old, came to our house last year and told me she was getting married.  I was so happy for her.  Then she said would you like to be one of my bridesmaids?  I said yes I would love too (my Mum cried).  The wedding was going to be in April and she would let us know all the details.

Then I had to have my four wisdom teeth out. I had to go to hospital and have them out while I was asleep.  My cousin Leonie has a dental practice (Diamond Dental in Wantirna), where we go for our check-ups, so she arranged it all for me and made sure they looked after me.  I was very anxious before the operation so they gave me a tablet to help me calm down.  I had to get dressed into a hospital gown and I was cold so they gave me a nice warm blanket.  I was taken to the operating room and I don’t remember anything more until I came back to the room with a bandage wrapped around my head and some small icepacks on my cheeks.  It all went very well and I didn’t have any bruising and only a little bit of swelling, which was just as well because it was two weeks before the wedding.

Taryn had four bridesmaids and we got together for makeup trials, dress shopping it was so much fun.  We also had a bridal shower and played games, she also had a Hens Night but I decided not to go to that.  On the day of the wedding my mum drove me to Taryn’s mums house where we were to have our hair and makeup done.  Taryn gave us all special gifts, a silk dressing gown each, hanging on a coat hanger with our names printed on it, jewellery to wear and pins for our hair.  We had lunch together and had lots of fun.  We then all got dressed and had lots of pictures taken, they live in Belgrave, near the Puffing Billy so we had pictures taken there.

Daniel was my partner for the day and he was a really nice.  We had a lovely time at the wedding lots of dancing and nice food.  Taryn and her husband made speeches and then left for their honeymoon. They went to Europe for four weeks and had a great time.

Then in May, Mum Dad and I all went to Bali for two weeks holiday.  We stayed in a Villa, and I had a big room with a King Size bed.  We had people come every morning to make us breakfast, whatever we wanted, we just had to let them know the night before what we would like.  We had our own private swimming pool.  My Aunty and her friend were also in Bali for a couple of days at the beginning of our holiday trip, so we went for a walk to see if we could find their resort.   We found it and stayed the afternoon with them, they then came and had a BBQ dinner at our Villa the next night.  We did lots of walking and I got blisters on my heels.  The weather was really hot and I got a heat rash, but it cleared up, but I also got eczema.   We had massages nearly every day, and ate out at different restaurant.  I did a little bit of shopping, but I didn’t like arguing about prices.  On the last day, mum and I went and had another massage and a facial and then had our hair washed, and dried, the ladies were so nice.

I have had a really exciting couple of months and I thought I would share it with you.

From

Nicki Fry

A new diagnosis

Every family who learns of a Williams Syndrome diagnosis has many questions. It is natural to experience a variety of emotions and not know who to turn to. Google is often a first point of reference which can be helpful, but can also be unhelpful. This video shares some first-hand experiences of families in our group.

Thank you to our sponsors; Genetic Support Network of Victoria and Rotary Club of Canterbury.
Videographer: Lars Vorlicek

Your Life Your Design – Getting a Good Life with Brodie McElroy

Check out Brodie from our group. He has done a video and live interview – super exciting!

With the help of his Circle Of Support, Brodie has designed and fulfilled many dreams and desires, to work, study and live out of home.

“Circle of Support assists me to plan and live a good life in the community.”

Check out this inspiring interview. Go Brodie!

Source: “Talks That Matter” from Belonging Matters Inc.

Erin’s trip with friends of Austour – January 2018 Summer holiday

Wednesday 3rd January  We departed from McDonalds’ Nunawading car park at 8 am before travelling through Yea, Bonnie Doon and then onto Wangaratta.  We arrived at our accommodation at Howman’s Gap Alpine Centre near Falls Creek.

The day before we left I hurt my back and my doctor told me to should rest in bed for the next 4 days, however after taking Nuromol I felt I could sit in the bus, my back ached at first but I coped.

Thursday 4th  –  We spent the next day exploring Falls Creed and Bright,.  Falls Creek is quite lovely and we walked around Bright.  My back was OK while I walked.

Friday 5th – We were allowed to sleep until 9 am and then went to Mt Buller.  We stayed in the Ski Alpine Lodge Mt Buller.  This was the worst night as my back played up, it took four people to take me to bed.

Saturday 6th –  We had a rest day, I laid on the couch with a heat bag and talked to people.  Others went walking around town.

Sunday 7th –  We left Mt Buller and travelled through Myrtleford to Wangaratta on our way to Albury.  We had lunch at the Vines Hotel where Ned Kelly used to sneak in through a long tunnel built for him to keep away from the Police.  I had a snitzel with veggies and gravy.  We walked around Glenrowan and I bought a T shirt.  We stayed the night at the Fountain Court Motel in Albury.

Monday 8th –  We did a boat cruise on the Hume Weir and a ride on a paddle steamer… A night out at the Albury RSL Club for dinner.

Tuesday 9th –  Early start today as we travelled to Parkes. we stayed at the Parkview Motor Inn a kilometre drive out of Parkes and went into town.

Wednesday 10th – It was my birthday on this day.  We had a full day at the Elvis festival.  It was a fun day with lots of laughs and lots of music.  Went to the pub for dinner.  The Elvis Impersonator (Dean Rais) sang Happy Birthday to me and gave me a CD he had made. I also got an Elvis stick on tattoo.

Thursday 11th –  we left Parkes and the Elvis Festival after having had lunch at the Elvis museum and headed off to Narrandera on the Murrumbidgee river – our last night together.

Friday 12th  –  From Narrandera to Echuca and a river cruise in a paddle streamer which was fantastic then home.

It was an excellent trip, except for my back for the first few days.  I would go with this group again, last year we went to Tasmania and it was just as much fun…

Story by Erin Smith

A new video about our group

A positive and insightful snapshot about how the support group can helps families and individuals with Williams Syndrome and the benefits of being in the group.

Thank you to our sponsors; Genetic Support Network of Victoria and Rotary Club of Canterbury.
Videographer: Lars Vorlicek

Circles of Support – A workshop to explore who will stand with you

Presented by

Our friends at Belonging Matters Inc. are hosting this workshop and it may be very useful for members and families in our group. Our own Justine is involved in this project to help families set up and strengthen their circles.

When and Where

Wednesday 7th March, 2018, 9.30 am – 4.00 pm.

Burwood District Bowls Club, Warrigal Rd, Burwood, VIC

What is this workshop about?

The idea of an active support network is really an old idea in our society. For people with disabilities, Circles of Support is an idea and practice that has been around for over 25 years. It is not a service or program but rather a group of people who are intentionally invited to come together in friendship and support of a person with disability, for the purpose of achieving their goals and protecting their interests into the future. Circles of Support can enable: more people in the life of each individual who are not paid to be there, an increase in the number of new and positive roles that people hold, reconnection with family members, expanded social and economic opportunities, an important safeguard for the future and a better life. In this workshop you will learn about:

  • Intentions and possible purposes of a Circle of Support,

  • The key dimensions for a successful Circle of Support,

  • The practicalities,

  • How to recruit, invite and support Circle members,

  • How to take the steps to start or strengthen a Circle of Support, and

  • The possible limitations and how to overcome common areas of challenge,

  • How to engage a vision for an inclusive life.

You will also hear some “real life” stories from people who have a Circle of Support. This is a practical workshop and will use interactive exercises, refection and discussion!

“Motivating. Changed my life. Phenomenal. Succour for the soul! Lots of useful information.
Hearing how it is actually put into practice/personalised. Practical ideas, take away to work on.
I liken it to the “BIG BANG.” Real, rich and grounded. Truly inspiring & emotional. The speakers
were excellent. Daring to imagine, courage to change and determination to act. Mindset
changing. Lots of thought & reflection about the ‘how’ to do. Honesty, humanity, equality. Opened my mind to new ideas. Enlightening.”

Who is this workshop for?

People with a disability, families, circle members, friends/allies, and others interested in developing Circles of Support with people who have a disability or other who may be at risk of marginalisation, loneliness and exclusion.

More information & booking

Research findings: The Perspective and Experience of Families Raising a Child with Williams Syndrome

Rebecca Bobin

Research Assistant
La Trobe University
Developmental Neuromotor Cognition Lab

Rebecca Bobin is a Master of Clinical Psychology candidate and provisional psychologist within the Australian Catholic University. Rebecca completed her BPsych (Hons) research project under the supervision of Dr. Hocking and her research interests include the nature and prevalence of anxiety in both typical and atypical development. Rebecca is a Research Assistant within the DNCLab and has research experience working with typically developing children and individuals with Williams Syndrome.

In 2017, Rebecca approached our group for volunteers to participate in qualitative studies for her thesis on The Perspective and Experience of Families Raising a Child with Williams Syndrome.  Rebecca has completed her thesis and has kindly shared her findings with us.

The thesis is a lengthy and highly worthwhile read and includes many anonymous quotes from family members in the group.

Thank you Rebecca for generously sharing your findings with us. We trust this will help to give greater understanding to families and the wider community about the relational and experiential aspects of Williams Syndrome.

“I had the privilege of meeting 15 families of persons with Williams Syndrome in 2015 while writing my Honours thesis. In spending time in their homes and chatting with them, I felt I was seeing something quite special about the quality of relationships I was observing. Reviewing the literature, I found that there is research documenting the challenges of raising a child with a neurodevelopmental disorder, but very little investigating the positive aspects. I believe this is a useful exercise for two reasons. Firstly, it may be helpful to families starting out on their journey, to recognize the positive dimensions of raising a child with a Williams Syndrome in addition to the hardships. Secondly, understanding the positive as well as the negative impacts of raising a child with a disability could lead to a more balanced view of families and disability in general.

This study aims to explore what opportunities and rewards (personal growth, resilience, appreciation, support) are experienced by having a family member with Williams Syndrome and what impact having a family member with Williams Syndrome had on the lives of family members (positive and negative). Importantly, the study hopes to capture the perspective of parents, grandparents and siblings of an individual with Williams Syndrome. Family members were encouraged to share stories, anecdotes and perspectives via an online questionnaire.”