Meet our Families

Lili’s story

Lili was born a healthy baby but contracted severe meningitis at 8 weeks old. This caused significant brain damage resulting in a developmental delay. Her remarkable recovery was through her sheer determination to survive and achieve.

For the first 3 years of her life Lili smiled her way through intensive therapies which helped her to walk and develop her fine motor skills. However her ability to communicate was significantly delayed and stepping outside her familiar environment was very traumatic.

From Dr Coral Kemp

Margaret (mum) had struggled to find an early childhood centre willing to enrol Lili because of her significant delay in most areas of development. At that time Lili’s most notable difficulties were in the area of language, self-help and social skills. The fact that children with a range of ages and skills can be enrolled in a childcare centre meant that Lili could be easily accommodated in the centre. The individualised STaR program delivered one-to-one and in small groups meant that Lili also had a program specifically designed to meet her developmental needs.

Lili fitted into the centre beautifully. Over the next three years she engaged, and was engaged by, her peers who supported her language development and encouraged her to try new things. By the time Lili left the program at the end of 2004 it was hard to pick her in a group of her typically developing peers. In fact, I challenged a visiting officer from the Special Education Directorate of the Department of Education to do just that. Lili was sitting in a small group of children while one of the educators was reading a story. She was thoroughly engaged while the story was read to the group. It was no wonder that our visitor was not able to identify the child with a disability.

When it was time for Lili to go to school, Margaret decided that significant health concerns meant that a special school was more likely to meet Lili’s needs than was a mainstream kindergarten class. We supported that choice in the knowledge that Margaret was still committed to inclusion in the broader sense. Lili is and always has been included: in her immediate and extended family and in the wider community.

From mum

I was nervous when I arrived at yet another childcare centre seeking a place for my child. Lili’s developmental delay was severe and I had been rejected from four other places, but my understanding that these people from Macquarie University helped children with disabilities gave me hope. Lili was anxious too as new people and environments terrified her, so we hung on to each other. I look back on that day as the most life-changing day for Lili and our family. We discovered special education.

Soon our girl began to lose her fear and mistrust of the unknown. Her dependence on me decreased and she began to talk. The other children didn’t place labels or limitations on her; they saw her as simply one of the kids who did things differently. Surrounded by people who recognised potential in our child, we were given hope. I gained the confidence to cease other interventions that were stressful and costly.

No mainstream school could cater for Lili’s needs so I had no choice but to send her to a special school. I worried about segregation until Coral wisely pointed out to me that inclusion happened in many forms and that Lili could and should participate in her community – and she does.

Our Lili, School Captain at Clarke Road School, completed her HSC in 2017 without any stress! She is a social, energetic and happy young woman with the world at her feet. She is surrounded by a group of family, friends and professionals who ensure she has the best. We all learn from her. I remain grateful that STaR instilled a belief in me that my child can learn.


Will’s story

Young Will with Barry Hall at the 2007 MonSTaR Cup

Will with Barry Hall from the Sydney Swan at the 2007 MonSTaR Cup

Not-so-little Will presenting at the MonSTaR Ball, 2016

Will presenting at the annual MonSTaR Ball, 2016

Will spent the first months of his life in an overseas orphanage, neglected and undernourished. Arriving at his new home in Australia at 16 months old, Will couldn’t crawl, play or grasp his mother Kathy’s finger. He was diagnosed with mild Global Developmental Delay. Gradually his naturally cheeky and loving personality emerged and he began to learn how to be a toddler – walking at 27 months and speaking his first words soon after. Although Will had other early intervention services, it was only once he started with STaR that he really began to shine. In 2016, Will spoke beautifully at the MonSTaR Ball as a second-time guest speaker and received standing ovation from over 400 inspired guests!

This young man has completed his HSC in 2017. Now working under the guidance of Director Katrina at Thinking Hats Early Learning Centre, Will is loving his first job as centre assistant. The children enjoy playing with Will and he loves reading them stories. He is learning every day from working with a team who support each other and embrace difference.
The patience and stimulation provided by STaR educators and his family have enabled Will to overcome his difficult start to life, helping him to take advantage of opportunities to reach his full potential.

From mum

Our family was lucky to participate in the pilot program for STaR at the Meadowbank Multipurpose Learning Centre. Our son Will had global developmental delay and at one point we were not sure if he would ever walk or talk. Being part of the STaR program was incredibly beneficial for not only Will but for the whole family. We received amazing support and encouragement in all areas of his development. We went from being very stressed about his future to enrolling him in a mainstream primary school.

By the time he left the STaR program he was certainly walking and talking… and reading and writing. Those early years at STaR were invaluable in helping Will reach his potential and give him (and us) confidence in his abilities. Having a child with disabilities participate in a mainstream day care environment with the help of specially trained teachers is a wonderful gift on many different levels; every child with additional developmental needs deserves an early educational start like STaR offers. It is truly a wonderful program.


Angelique’s story

Angelique loves her tutu, tiara and fairy wings. Before joining STaR in March 2013, she was often on her own in childcare and quite unhappy. Angelique has an intellectual disability because of Noonan syndrome. During her attendance at a STaR-affiliated centre we often found Angelique in home corner having pretend cups of tea or pizza with her friends. Angelique was an enthusiastic participant in all activities – painting, singing, dancing and the activities that were preparing her for mainstream school.

From mum

Waiting for and/or receiving a diagnosis of a disability is excruciating. You know something isn’t quite right but you’re in total denial that it’s true. There’s no one to ask things of. There’s the maze of the system you’re trying to navigate. All you want is someone you trust to give you an honest answer and the help that you’re so desperately seeking.

Enter: STaR. We used to watch Angelique play on her own at daycare; no one was taking much notice, and every time we picked her up she burst into tears and clung to us for dear life. Then we found STaR, who offered us the most amazing gift of all – the help that we needed.

Dawn explained to us that Angelique could attend a regular daycare and be included as any regular attending child. She could also attend the same daycare as her younger brother. Angelique didn’t have to play on her own. She didn’t have to be unhappy any more. Angelique now has carers who understand her needs and assist her to be included. More than anything, helping her to be everything that she can. In 10 short months we have seen dramatic developments that simply weren’t present in her first 2 years of care in a non-STaR centre.

Angelique is now in Year 3 and was struggling with her reading at school. Her mum, Val, contacted STaR hoping we could help. We have been able to assess Angelique, design a program, purchase literacy resources, create a demonstration teaching video and provide this program and video to Mum and Dad and her school. Val reports Angelique has been making great progress, and we have visited Angelique at school to work with her teachers. This is an example of what true community is. Collaboration between family, STaR, and a small country school in the Southern Highlands in NSW.

Emily’s and Ruby’s story

Emily and Ruby

Emily and Ruby

Emily and her twin sister Ruby began attending a STaR affiliated centre in February 2015 and could often be found with their peers at the puzzle table or in the sandpit. Although they share velocardiofacial syndrome and autism spectrum disorder, which have affected their physical development and social communication, their interests differed. Emily loved painting and Paw Patrol videos and Ruby loved music, especially The Wiggles.

Both girls have formed strong relationships with the childcare educators who have seen great improvements in their communication skills. Each has improved greatly in her ability to let others know what she wants using gestures, signs, picture exchange (PECS) and, for Emily, some words.

In the early days at childcare, while some of her peers had a bottle of milk after lunch, Ruby had hers through a feeding tube. To the educators and other children this was just like any other child having their milk. This acceptance represents inclusion in action. Within 8 months of receiving her individualised STaR program, the childcare educators and the girls’ parents were excited to learn that Ruby, thanks to her hard work at chewing and swallowing, no longer needed to use a feeding tube at lunch time.
Ruby and Emily are now in school. Despite the severe impact velocardiofacial syndrome has on the girls’ physical health, Ruby and Emily attend school every week just like their peers.

From mum

STaR helps us in so many ways with schooling, inclusion and sometimes just life. They make dealing with some really hard aspects of a special needs child’s life, just that little bit easier.


Saeed’s story

Saeed

Saeed at his local childcare centre

Saeed's mum and Megan

Saeed’s mum and STaR’s Megan

Saeed is four years old. His family are refuges from Sudan. He loves playing with his friends at Kids Early Learning – Rooty Hill. He’s cheeky, curious, fun loving and can be a bit stubborn sometimes. He has Down Syndrome but that doesn’t define who he is. Saeed enjoys the daily activities of child care, and loves to be social with his educators and friends. His medical condition is complicated, so he is often sick.

At STaR, Saeed is learning to:

  • join his friends for shared book reading. He imitates ‘reading’ while looking at pictures using sounds with intonation.
  • communicate using single words, word approximations and gestures.
  • use his open cup to drink water and juice, to keep him hydrated throughout the day.
  • draw, play and sing songs at group time.
  • go to the toilet by himself. His mum is very happy about that.
Saeed’s three sisters love their new bikes that the MonSTaR Foundation gave them. They ride them all the time! Since Saeed can go to child care three days a week, his mother is able to attend English lessons in the hope of getting a job. STaR is making a huge difference to Saeed and his family.

Nathaniel’s story

Nathaniel playing

Nathaniel loves to play with his peers at childcare

Nathaniel with Elise

Nathaniel with STaR Educator Elise

Nathaniel drawing

Nathaniel loves drawing and he’s great at it

Imagine a very sociable little boy, just 5 years old, who gets invited to the birthday parties of other children attending his childcare centre at Glenwood. Think of his enthusiasm for trucks, cars and trains. Share his anticipation of going to school with his older brothers next year. These are very positive aspects of Nathaniel’s world.

Nathaniel also has challenges that result from Aperts syndrome. For him to even experience the joy of playing with other children, his parents had to take the risk that he would ‘catch’ ordinary childhood illnesses that challenge his suppressed immune system. Nathaniel has to work hard at learning skills that come easily to most children his age: dressing, toileting, using scissors and pencils, climbing, speaking so that he is understood.

Luckily, there is a committed and collaborative ‘Team Nathaniel’ who ensure that his childcare day gives plenty of opportunities to practise the skills he needs now and for school next year, while he does whatever the other children are doing and has fun. On the team are Nathaniel’s childcare educator, a STaR special educator and his speech pathologist, physiotherapist and occupational therapist, all guided by his parents’ priorities. They plan the steps and the right amount of assistance and praise as Nathaniel becomes more competent and independent.

Right now, Nathaniel is getting ready to be a schoolboy who is able to follow instructions, take part in news time, manage his lunchbox and schoolbag, write his name and take turns in an activity. These skills – and his dazzling personality – will be a recipe for a successful start to school, along with the welcoming attitude that Cherrybrook Public School has shown.

Nathaniel is a brilliant reminder that STaR children are so much more than their diagnosis labels!


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Funding

The STaR Association receives funding from the Australian Government Department of Social Services (DSS) and the NSW Department of Education

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