We first came to realise that our son was autistic, when he was around the age of 15months old. He seemed to act like he couldn’t hear us when we called him, but managed to hear the ads on the TV. He was also not doing a lot of his milestones, which was a concern. He used to do quite a few things earlier on when he was younger, like waving and saying words like mum, dad, bud and bob. He seemed to stop doing all those things over time and didn’t say anything, and didn’t wave anymore. When we took him to our local clinic for his 18 month check up we discussed our concerns and she then sent us for a hearing test and a speech assessment. We also took him to our local Paediatrician for a second opinion, and at that stage because of our son’s age he said that worst case may be that he has about a 5% chance of it being autism. At that stage we didn’t even know what autism was, and didn’t think too much more about it.After waiting for his speech assessment and hearing test we noticed our son doing some odd things like spinning in circled and hitting himself in the head along with banging his hands on his ear and so on. He had also started with the spinning of wheels on toy cars and not knowing how to play with any other toys. We managed to get his hearing and speech assessments done and found out that he didn’t have a hearing problem, but did have a severe speech delay. I mentioned to the speech therapist that the doctor had mentioned about the 5% chance of him having autism and she replied by saying, that just watching him play was very odd.

When we came home after all the assessments we started really watching and noticed he was doing a lot of odd things. We decided to get onto the internet and look up autism. After finding all this information ,we went through and looked at all the signs that point to your child being autistic and managed to tick almost every one which related to our son. We then were convinced that our son had autism. The next step that we took was getting a referral to see a doctor at Westmead. He then confirmed what we had already thought he was going to say and from that moment on we have been really just trying to help our son as much as possible. He was diagnosed as being on the spectrum on the 23rd September 2002 and is due to go for another assessment at the CDU Westmead in Early April 2003.

Our son now attends childcare two days a week and also attends Lifestart once a week. It is continual work for us at home but hopefully it will one day pay off .

My first experience with Lifestart was in 1999, when my son was 2 years old. At this time, my son had some obvious, but undiagnosed developmental delays, including a severe speech disorder and low muscle tone. I was told about Lifestart by my son’s speech pathologist and after some initial doubt decided that it couldn’t hurt to have a look. This first step was probably the hardest that I had to make. Approaching a new group of people whose children all had special needs was daunting. Up until that time, I had tried to pursuade myself that my son’s delays were nothing to worry about. But as time went on, the differences between him and his peers became more apparent. I had started to feel alienated from my friends and their children. Their kids were all walking and talking and getting up to all sorts of mischief - we still had so far to go.

So we attended the Inner West playgroup and were welcomed into what felt like a family. My son and I no longer felt like outcasts as there were other families with similar issues to us. I came home from the first playgroup terribly excited, happy at last to have found people that I could relate to. We kept returning and each playgroup session saw my son playing and learning from a Speech Therapist, Physiotherapist and an Occupational Therapist, not to mention the other children. There were volunteers at the playgroup who helped care for siblings and I was quickly drawn into a parent support network.

From a personal perspective, the support that we as parents of special needs children can offer each other is a wonderful thing. To be able to talk with other parents who could understand what I was experiencing. I recall one mother who initially came to Lifestart playgroups in tears every week. Her frustrations with the issues of raising a child with special needs were proving too great for her to cope with. However, we all knew what she was experiencing and be able to offer support. I’ve seen many a parent, myself included, shedding tears of frustration - however surrounded by parents who can empathise with the day to day struggles, we somehow seem to make the obstacles more manageable.

My son participated in the playgroups for about a year, and around this time his delays were becoming more obvious. We were also having problems with some behavioural issues. So Lifestart came to the party with 1:1 consultations for him. I had a Special Educator visit us regularly at home to provide early intervention for Sam and advice for me about how to deal with his problem behaviours.

In 2001, my son finally received the diagnosis of Autistic Spectrum Disorder and with that came a new set of challenges for our family. And as always, Lifestart was there. The staff were there to advise me and be a sounding board for my ideas and the parents were there to lend a shoulder.

Autistic children and adults have their own way of viewing the world and I needed a lot of help to try and understand his world. Lifestart provided me with many of those insights. For example, my son relies heavily on routines to provide him with comfort in such an uncertain world. Knowing what will happen next is very important to his peace of mind. Our special educator showed me how to use pictures to help him plan his day in advance. We now have a huge monthly planner white board hung in his bedroom so that we can show him not only what will happen this afternoon, but what will happen next week. And exactly when that upcoming, longed for event will take place.

AAC
Alternative and Augmentative Communication. Communication methods which may be an alternative to speech or augment (help or add to) speech. These may include signing, using visuals, or using computer systems.

Advocate
A person who represents and/or supports a person with a disability to consult, take action and/or raise complaints with a view to ensuring that the individual’s fundamental needs be met. An advocate may, but does not have to be, trained by an Advocacy organisation/project.

Carer
A relative, neighbour or friend who provides unpaid assistance with the activities of daily living to a person with adisability. Carers frequently live with the person for whom they are caring and support they provide may encompass many services.

Collaborative
A collaborative process is one which involves working together equally with a number of different professionals.

Developmental Delay
A young child who is not achieving expected the milestones for their age may often be described as having a “developmental delay”.

Disability
An inability to perform any action due to some kind of impairment.

Disability Descrimination Act (1992)
This makes it unlawful to discriminate against a person because of their disability.

Disability Services Act (1993)
This sets out the rights of a person with a disability.

Early Childhood Intervention
This service supports children aged 0-6 with a disability, as well as their families and communities.

Family-Centred
Intervention which is family-centred focuses on the needs and preferences of the whole family.

IFSP
The Individual Family Service Plan outlines the achievements, outcomes, and goals for a family.

IEP
The Individual Education Plan outlines the educational outcomes and goals for the child with a disability.

Who are the staff?
Lifestart employs an experienced team of teachers and therapists (speech pathologists, occupational therapists and physiotherapists), teaching assistants, administrative staff, and in some areas a social worker and/or a family coordinator. Most staff work within a particular branch, but some have responsibilities across all or many branches. Lifestart staff members undertake professional development programs and network with professionals within and outside of Lifestart to share knowledge and skills.
By assisting staff and families, volunteers are a valued part of Lifestart. All volunteers take part in a training program. They fulfil a variety of roles, according to their skills and interests.

Is there a waiting list?
Waiting lists do exist for each branch. The number of families waiting for services varies over time and by branch. Families who are on the waiting list are welcome to attend Open Playgroups, where they can have informal contacts with staff and meet other families. They may have options to take part in courses, attend information evenings and receive newsletters. Families on the waiting list are given information about other services that they could access.

Areas Served by Lifestart:
Lifestart has seven branches in the greater Sydney area: Cumberland/ Prospect, Eastern Sydney/Maroubra, Inner West, Nepean, Northern Beaches, Hornsby and Eastwood.

How do I know which Lifestart branch to contact?
If you are uncertain, please contact our Head Office on (02) 9807-9700. You will be given the information for your local branch. Please see Lifestart Centres and contact details.

What services does Lifestart provide?
Lifestart offers services to families who have a child with a disability or a delay in development, or a child who is at risk of delay. These services include early childhood intervention services for 0-6 year olds and their families, and services for school aged children, aged 6-18 years.

Early Childhood Intervention services include:

* Open Playgroups – open to any family who have a concern about their child’s development,
* Small group sessions,
* A baby program, involving group and individual sessions,
* Home visits, or individual sessions at the centre, with a teacher or therapist, to plan and implement an individual program,
* Development of Individual Family Service Plans,
* Preschool or childcare support,
* Courses for families, including courses developed by the Hanen Centre.

School Age Services was established by families of Lifestart Cooperative to provide a continuing support service for families whose children graduate from the Lifestart Early Childhood Intervention Program. The Lifestart School Age Services program empowers families and assists school systems and community organisations to better meet the needs of families. It currently operates in the Northern, Inner West and Eastern Sydney areas.

Family-to-Family Support is a vital aspect of Lifestart. We offer a range of opportunities for social contact and family-to-family support. This is an important aspect of Playgroups. Other activities are planned by local Parent and Friends Committees and may include children’s clubs (including siblings clubs), friendship groups, fun days, school holiday programs, etc.

What kind of organisation is Lifestart?
Lifestart is a Co-operative that was founded and is now led by member families and professionals for the benefit of members. It is a not-for-profit, non-government organization. It is accountable to its members and funding bodies. Families participating in Lifestart services are members of the Co-operative, and are entitled to vote in elections. There is no joining fee.

Lifestart provides a family-centred service that responds flexibly to family priorities and to changing family needs. Lifestart values and fosters family-to-family support.

Families are very important in providing the high-quality service expected from Lifestart. Families are encouraged to be actively involved and to offer assistance in all aspects of the program.

Who manages Lifestart?
Lifestart is overseen by a Board of Directors, and each of our branches has its own Parents and Friends Committee (P&F Committee). The Board and P&F Committee consist of parents/carers and professionals, with parents/carers in the majority. All families are very welcome and encouraged to be involved in their local P&F Committee and the Board of Directors.

How is Lifestart funded?
Lifestart must actively raise all of its funding. Currently, the organization receives a recurrent grant from the NSW Department of Ageing, Disability and Home Care (DADHC), and varying annual financial support from the NSW Department of Education and Training (DET). Members are asked to pay term service fees, however no family is refused service based upon an inability to pay. In all Lifestart areas families work to raise the additional funds needed to provide a complete service to its member families. Lifestart often attracts additional financial support from local governments and community donations.

Why do parents pay fees?
There is always a gap between what we receive from government grants, and what we need to fund the programs that families are requesting. We can meet this gap through fundraising and through contributions from families. P&F Committees in each area set the level of these contributions.