Category: Down syndrome

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The 2013 NSW Carers Awards


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Being a carer


When I was growing up I knew I wanted to be a mother, and I was blessed with four beautiful children who are all now young adults. They each have skills and talents as well as difficulties and challenges. For me, being a mother and a carer is a privilege and an honour. My children have taught me a lot about what is important in life, and what is not. As well as worries and struggles, there are inherent joys and pleasures.

Being a carer has shaped who I am. It has influenced the friends I have made, the career I have chosen, the area I live in and the beliefs and attitudes I hold. As a carer I am resourceful and capable. There are some things I do really well, but there are some things I struggle with. Perfection and I parted company a long time ago. Some days are good and some are not so good. Having bipolar disorder makes my caring role more difficult, but try to be positive and I never give up.

My role in life is to be the best person I can be, so that I can look after my family and, together with my husband, raise our children to be good people who achieve to their full potential, whatever that may be, who have a strong sense of social justice and who to contribute to society. Each of them achieves these things and I am very proud of them.

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The economic value of carers


Play the youtube clip while you are reading the post.

Job Advertisement
Wanted:

A person willing to work all hours of the day, 7 days a week, with no sick days, personal leave or holidays. There is no salary, bonus plan or superannuation. You must be a self-starter and an entrepreneur. You must also be willing to learn the job by trial and error. You must be emotionally involved with the person you are going to work for and be willing to work until you are exhausted. The person you are going to work for may not be able to express any appreciation and may even be abusive to you at times.  Anyone interested in the job, apply immediately.

In 2010 Carers Australia commissioned Access Economics to undertake an Australian study of the economic value of the informal care provided by unpaid family carers for people with disability, mental illness, chronic conditions, terminal illness and the frail aged. That report found that the value of informal care exceeded $40 billion per annum in 2010. This was based on the replacement cost of care of $31 per hour. A huge proportion of this cost was due to demographic ageing, but mental illness significantly contributed to the increasing number of Australians who required and received care. Informal carers (overall) provide over $1.32 billion hours of care each year, and represent a precious economic resource. (The economic value of informal care in 2010, Access economics report for Carers Australia).

As a community we need to appreciate our carers. There are a lot of us out there, and a little validation goes a long way.

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Sydney book launch


Awesome doesn’t even begin to describe it. The launch of my book ‘Art From Adversity’ on Saturday was all I hoped it would be and more. Thank you all so much for supporting me. I really appreciate it. I raised $1,000 for mental health research that will benefit young people, especially young women. Photos to come!!

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Anne Naylor Carers NSW Q&A


Anne & Josh

Anne Naylor is many things a mother, a carer, artist, teacher and now, a published author. Her latest work Art From Adversity: A Life With Bipolar details Anne’s personal experience with bipolar disorder and how the illness has brought positives to her life including increased creativity and a strong sense of empathy towards others. She also talks about being the primary carer for her son.

Congratulations on your new book. What inspired you to write Art From Adversity: A Life With Bipolar?

In 1987, when my son Joshua was born and diagnosed with Down syndrome, it was hard for me to know what to do with the strong emotions I felt. I started writing and it evolved from there. In 2005, I experienced a sudden, intense desire to create artworks, which was accompanied by the advent of bipolar disorder. My paintings and drawings are highlighted in the book. What ultimately led me to publish Art From Adversity: A Life With Bipolar was the desire to share with people what it is like to have a mental illness and to be a carer, and to illustrate how you can not only survive, but thrive. I wanted to empower people and I wrote a large part of the book especially for carers.

In the book you look at the both the positive and challenging aspects of mental illness and being a carer. Could you tell us what the key challenges and positives have been?

The most challenging aspect of mental illness is living with it every day. The behaviours and issues that accompany mental illness are really hard for everyone. Positive things can come from it though, such as creativity and the inspirational ways people deal with it. As a carer, I face a variety of challenges and a big one is fear of the future. Having a child with an intellectual disability does bring challenges, but with it a beautiful child, great friends, siblings with a wonderful sense of social justice and an interesting life for my whole family.

Tell us a little bit about your role as a carer. What does a typical day involve for you?

Joshua is now twenty-five. He has Down syndrome, mild autism, a severe speech and communication disorder, a mild hearing loss, obstructive sleep apnea and depression. He is a gentle young man and everyone who knows him loves him. I am luckier than a lot of other carers because, despite his challenges, Joshua is mobile and he travels to and from work independently. He can be left on his own for a few hours, although not overnight and he needs some assistance with some of his daily personal care needs. My caring role for my adult children with mental health problems involves me giving them practical and emotional support to help them to manage their illnesses. I have the same daily routines as most other people. I work part-time and look after my family. Bipolar is my constant companion, but I manage it as well as I can and try to minimise its impact on my life.

You have so many different roles and responsibilities as a mother, author, teacher, artist, advocate and carer. How do you do it all?

I am like most other mothers and carers. Perfection and I parted company a long time ago. I do everything kind of OK and nothing really perfectly. I am not rich but I have a cleaner and that saves my sanity. It takes away a huge area of stress.

Since becoming a mental health consumer and carer, what have been your greatest sources of support?

I get a lot of support from my friends. My family is amazing but nothing can replace really good friends that you can talk to and share your experiences with. There are also fantastic services available such as Carers NSW.

Finally, what advice would you give to other carers out there?

 Do your best to change the things you can change and don’t stress about the things you can’t. Spend time with people who make you feel good about yourself. Choose your battles wisely and say ‘no’ more often. Make use of available services and respite, embrace opportunities and focus on the great things about your life. One of the great things about my life is having written my book, Art From Adversity: A Life With Bipolar. It is creative and positive, entertaining and informative. It is a unique celebration of difference and diversity. I hope you enjoy it.

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What makes you happy?


It’s no longer acceptable to believe that simply getting by in life is an indicator of success in life. Success has become life’s greyhound rabbit, a moving target forever out of reach. This is because as human beings we are innately materialistic and competitive. When we get something we want there is always a new target to aspire to: a nicer house, a better car, more money and so on. It is the same for happiness. They are both inherently elusive.

I suspect that true happiness might actually be nothing more than a few cheap laughs from the TV and a late night run to petrol station for a Cornetto and a packet of chips. A conversation with a friend. A nice email. Having a hair cut. Doing something nice for someone else. Remembering someone’s birthday. Looking after a child with a disability or a mental illness and not getting all bitter and twisted about it. You don’t have to be happy about it to be happy (if that makes any sense).

Would mediocrity make you happy?  Mediocrity. n. ~ (from the Latin mediocris) An easier state of being; a life more ordinary. According to this definition, mediocrity is about are moderate happiness and self-acceptance, and that is my goal. Mediocrity is not synonymous with not trying. It is not about being indifferent. It is not about lowering your expectations of life. It is about celebrating everyday pleasures, the regular, normal, commonplace, average, mundane things in life.

Success is as dangerous as failure. Whether you go up the ladder or down it, your position is shaky. When you stand with your two feet on the ground, you will always keep your balance. (Lao Tzu 604-531BC). Most of us will end up with an ordinary life: a handful of people who care about us, a few randomly timed opportunities, a bit of luck now and them, an assortment of indescribable moments of bliss, and loads and loads of challenges. And that’s OK. It’s ordinary. It’s enough for a successful life, a happy life. A life that I want.

Blues music makes me happy. People who take me just as I am make me happy too.

What makes you happy?

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Where to buy my book


My book is now available for purchase through the publisher’s website and also through Amazon and Barnes and Noble.

I still haven’t seen it yet. It comes on Monday (I hope).

Wow.

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A post for Claire


Hi Claire,

This is why I am publishing my book:

‘Our lives begin to end the day we become silent about things that matter.’

Martin Luthur King Junior

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Anne Naylor’s bipolar book


This is my book cover. It is a bit small and hard to read here, but you get the general idea.
I am so happy with the way my paintings turned out – the colours are really vibrant.
There is a synopsis and sample chapter in the new ‘My book’ page (see the tab above).
I have also changed the text in ‘My bio’. Let me know what you think.

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Art from adversity: A life with bipolar


My book is finished. It will be published next year in April/May.

Art from adversity: A life with bipolar is an illuminating, uplifting and entertaining memoir about adversity, mental illness, bipolar disorder, Down syndrome, creativity and art. It is divided into two parts: the first a collection of personal stories and the second interesting and useful information about bipolar disorder, and informal advice for carers.

 “This book is written with great courage and amazing creativity, and by telling her stories Anne is leading us out of the shadows towards a stigma free word where mental ill health will be as well understood, accepted, funded and overcome in the same way as physical illnesses like cancer and diabetes.  Australia is showing the way in this international challenge and the courage of individual stories like Anne’s if told enough and listened to enough will change the world.”

Professor Patrick D. McGorry AO, MD, PhD, FRCP, FRANZCP
Australian of the Year 2010

“This is an inspiring book in which Anne has drawn on her own experiences to educate and inform others suffering from bipolar disorder. Her use of narrative, paintings and poetry is engaging and illuminating. It is an excellent addition to the literature on bipolar illness and a brilliant read.”

Professor Gin S Malhi MB ChB BSc(Hons) MD FRCPsych FRANZCP
CADE Clinic, The University of Sydney

For more information about the book, watch this space …

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