Lexi Duffy is an inspirational lady. Not only is she the President of the Coffs Coast Autism Parents Support Group, but she also holds down 3 jobs, is in a band and cares for her own Autistic son. She gives us an insight into Autism and how she copes with her hectic schedule.
Autism is something that many of us don’t quite understand. Can you give us a bit of an insight into the condition?
Autism Spectrum Disorders (ASDs) are lifelong developmental disabilities characterised by marked difficulties in social interaction, impaired communication, restricted and repetitive interests and behaviours and sensory sensitivities.
The word ‘spectrum’ is used, because the range and severity of the difficulties people with an ASD experience can vary widely. ASDs include autistic disorder, Asperger’s disorder and pervasive developmental disorder not otherwise stated (PDDNOS), which is also known as atypical autism. Sometimes the word ‘autism’ is used to refer to all ASDs.
Studies show 1 in 160 Australians have an ASD and that it is more prevalent in boys than girls. The effects of an ASD can often be minimised by early diagnosis, and with the right interventions, many children and adults with an ASD show marked improvements.
> You’re the President of the Coffs Coast Autism Parents Support Group. Tell us about this organisation.
Coffs Coast Autism is a non-profit organisation run by families coping with Autism, for the support of families coping with Autism.
It is our aim to:
n Support and inform parents and families who are new to the world of Autism
n Provide ongoing support to parents and families
n Share strategies and ideas
n Raise funds for Autism services on the Mid North Coast
n Inform the greater community about Autism Spectrum Disorder
n Create opportunities for social interaction between families
n Increase our own capabilities to further support those affected by Autism
Although all parents deal with the news that their child may have an Autism Spectrum Disorder in their own unique way, the one thing that we all have in common is the need for relevant, concise information which is specific not only to Autism, but to our regional area.
There are so many publications on Autism available, which can often become confusing or difficult to absorb – our goal is to share with others what we found the most useful on our collective journeys. We have an ASD resource library at our office, which you can sign up to use completely free of charge.
Coffs Coast Autism and our local office is administered by a committee of eight of our dedicated members.
> What are the group’s plans for 2011?
As with previous years, our plans for 2011 are motivated by our aim to maintain and increase our ability to continue on with the ongoing goals of Coffs Coast Autism.
Inevitably, this involves a number of fundraising events. One of the most major of these will be our Trivia Night on March 12. Our annual Autism Awareness Walkathon is always popular, and we are once again planning for this event, which looks likely to be held in April or May.
Following our AGM, there will be some major discussion on locking in dates for other possible fundraisers also – stay tuned!
Another of our major plans is to continue in our organisation of events designed specifically for our families. In 2010 we introduced a teen / adult social group, which has proven very popular and will continue in 2011.
Our Family Big Play Dates must be seen to be believed, and the feedback we receive from our families about these events keeps us consistently motivated to keep on planning!
> Your own son is also Autistic. How does this impact upon your family, and how do you cope?
The impact on families with children who have special needs can be profound, regardless of the nature of those special needs. This is certainly true of families living with Autism, and these stresses are definitely visible locally, within our own group.
On a personal level, Thomas, who will be eight this year, has certainly thrown up some challenges. His speech development remains significantly delayed and, although I have seen some considerable improvement in the areas of coping with change and sensory sensitivities, these particular challenges pervade all areas of life – particularly family life and parental partnerships.
Coping, for me anyway, has been made much easier by seeking support, both for myself and for Thomas. I have made some wonderful friends through Coffs Coast Autism and consider some of the mums there to be the sisters I never had. They are there for me when I need them and, hopefully, I am there for them when they need me too.
Thomas was diagnosed at just two years of age, and this gave us the benefit of the local Early Childhood Intervention Program – including a supportive transitional class at Narranga in the year before school. Thomas then moved on into the Special Ed Unit at Coffs Harbour Primary.
I can’t tell you how impressed I have been with the first two years of his schooling there. The support of his teacher and the teacher’s aides has been invaluable in what can often be a particularly stressful area of life for many families.
> You also hold down 3 jobs and are in a band. How do you manage such a hectic schedule?
Time management! I’m not always as fantastic at that as I would like to be, but for the most part, that’s the secret really. That, and only taking on what you think you can handle. One of those jobs is unpaid, in the Coffs Coast Autism office, and it is important to me that I can continue to do that – but it can be a juggle.
My main occupation, besides singing with Magic Mojo, is doing bookwork for Beds R Us and One Stop Pine, and it was really important to me to find an employer who is flexible with my hours. They are really fantastic that way, and that has definitely helped to keep me sane.
For parents who have children with special needs, finding an employer who is sensitive to your family’s needs, although a difficult task, is really important to your sanity!
> What advice do you have for families dealing with Autism?
Seek support! Family support is very important, but unfortunately not everyone has that. Friendships often change when you have children, and having children with special needs can amplify that change.
Surround yourself with like-minded people as much as you can, educate yourself (but don’t try to learn everything at once), ask for help if you need it and join a support group if you can.
> How can people learn more or become involved with Coffs Coast Autism Parent Support Group?
For more information on Coffs Coast Autism, visit our website: www.coffscoastautism.org.au or phone our office on 6658 8330.
Our office is manned by volunteer staff, so if the phone is temporarily unattended, please leave a message. One of our friendly staff members will return your call.
> Thank you Lexi.