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Club Teen Turns 10 - Ben's Story

Tuesday, September 25, 2018

This month, September 2018,  we're celebrating 10 years of our Club Teen program. Club Teen was established in 2008, following a successful Commonwealth Government grant for the Extra Support for Teenagers with a Disability program. Community Living & Respite Services (CLRS) was one of 7 Victorian organisations selected to deliver this program, which we named Club Teen.

The program was quickly expanded thanks to philanthropic donors, fundraising and further government support to include children under 12. The program provides Before & After School Care during school terms, and Holiday Programs from 8am – 6pm for 10 weeks of school holidays. Club Teen benefits around 80 children each year. This provides enormous assistance to families and creates wonderful opportunities for children to experience a range of activities, develop skills and make new friends.

With the permission of Prue O’Dea we are pleased to share Ben’s story. Ben is one of the children who attends Club. Teen.

Ben’s story

Benjamin (Ben) a delightful 12 year old, is the much loved son of Prue and David O’Dea and Lauren's younger brother.  Ben was born with oesophageal atresia and duodenal atresia (both his bowel and oesophagus were not attached to his stomach) which meant that he spent the first six months of his life at the Royal Children’s Hospital.

During Ben’s first 10 days the doctors and a geneticist hinted that Ben might have Down Syndrome. The family had a meeting on Day 10 that confirmed his diagnosis.  Prue remembers her strong emotions at this news, but at the time all his medical problems were the priority and his Down Syndrome diagnosis was a mere sideline.  Ben stayed in the neonatal intensive care unit being “fattened up” for four and a half months.

At four and a half months old he had a 6 hour surgery to connect his stomach to his oesophagus.  The surgeon cut Ben’s tummy in half and fashioned part of his stomach into the lower section of an oesophagus and then stitched it all up again.  No mean feat on a 4.9 kg baby.  They finally got to take Ben home on 22 March 2007.  He was nearly 6 months old.

Prue remembers receiving some advice from her mid-wife that the family lives by – “just take one day at a time”.

The O’Dea’s involvement with CLRS started back in 2009 when Ben and Prue attended “My Time” – a supported play group. When Ben started school at Echuca Specialist School, David and Prue juggled work rosters to make sure they could collect both the kids from different schools. Then, Ben was registered with Club Teen – the CLRS Before and After School Care and Holiday Program, in case of an emergency. This time came and Prue phoned the Club Teen Coordinator Sue Edwards, who said she could fit Ben in at after school care. That evening Prue was delighted to hear that Megan, one of the original My Time carers, had taken special care of Ben.

In 2016 Prue and David participated in “Johnno’s Run” for the first time and were so proud of their achievements, but even more pleased to have had the opportunity to help in raising money for the “Opening Doors” project. The following year Prue and Lauren were part of the 2017 team, and in 2018 all the family participated and completed the 5kms. This was a fun family experience, that Prue says had such a wonderful community feel, with everyone united in participating for a great cause.

CLRS continues to assist Ben and his family, helping them through the NIDS journey. The O’Dea’s have the comfort of knowing that on the days when challenges arise there is someone around who can assist. CLRS is pleased to be that resource for their family.

To us all Ben is just Ben. His Down Syndrome does not define him.

Thank you to Prue for sharing Ben's story. Thank you to each person in our community that supports the work of CLRS and enables us to provide Club Teen and other programs that assist children and adults with disability.

Kind regards

Suzanna Barry

CEO

Pictured above is Ben playing UNO with his parents David & Prue.

 

 
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