Giving hope in the face of a bleak future

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Daniel was a healthy, happy baby full of life when suddenly everything changed. Rushed to hospital with multiple injuries at 3 months old, Daniel’s great aunty and uncle, Lesley and Steve, still don’t know exactly what happened that night. All they were told was that Daniel had severe brain injury and detached retinas causing almost complete loss of sight. For Daniel, there was the very real possibility he would be in a wheelchair for the rest of his life and never be able to see again.

Lesley and Steve desperately wanted to help and to keep Daniel in the family. When their application for permanency was approved by the Department of Family and Community Services, the couple were catapulted into full-time care of a baby with multiple medical needs. ‘When Daniel came to us, we were given a bit of background about his needs, but we didn’t really know what to expect.’

‘Although between us Steve and I have four grown-up children, we had never cared for a baby with brain injury. We just took it one day at a time.’

Due to his injuries, achievements that most parents would take for granted as natural developmental milestones were by no means plain sailing for Daniel. ‘Daniel had no muscle tone and could barely roll over. I thought, “If he can learn to sit he will have really achieved something amazing”. We had to put him every hour on this bouncy ball. He would scream blue murder, but we knew we had to persist so that he could get strong enough to sit by himself and maybe even walk.’

Getting Daniel to eat was another of Lesley and Steve’s major challenges. ‘He could only take his bottle for very short periods without aspirating,’ says Lesley. ‘I would have to prop him up and give him a quarter of the bottle, then stop, then give him a little bit more so that he didn’t choke.’

Daniel didn’t start getting his teeth until he was 13 months old, so moving to solid food was also a painstaking process. ‘He couldn’t tolerate certain textures due to extreme sensitivity. I would mash everything very finely then gradually change the consistency until he could eat solid food. Now he eats like a horse and will eat anything – except lettuce or fish!’

‘We couldn’t have done it without our Challenge case worker. She still visits once a month and is always there for us when we need to vent or we need advice or referrals.’

With six grandchildren, and herself coming from a family of 10, being surrounded by children seems to be Lesley’s destiny. Not only has she and Steve committed to being Daniel’s permanent carers, for the past 6 months the couple have been nurturing a baby experiencing withdrawal symptoms due to antenatal drug use. Little Toby, now 6 months old, needs around-the-clock care including administering of morphine every 4 hours. Toby is often distressed due to the extremely painful drug withdrawal process, and frequently screams through the night.

But the sleepless nights and the continual and intensive health care both children need has not been the most challenging aspects for Lesley. ‘Once when I took Daniel to see the community nurse, she said I was doing it all wrong because he wasn’t eating solids when he should have been,’ Lesley remembers. ‘It was like a slap in the face. We were doing everything we could to help him. He just didn’t fit into the text book baby the nurse wanted him to be.’

In truth, Lesley and Steve have got it very much right for these two extremely vulnerable children in crisis. Little Toby has emerged from the worst of his withdrawal and will soon be placed in his grandparents’ care.

‘It’s heartbreaking seeing them suffer, but it’s also so rewarding to see both children achieve even the smallest milestone.’

As for Daniel, he is now a happy and almost normal-functioning four-year-old. Not only can he sit, he now walks and speaks clearly with a posh-sounding voice. He attends pre-school two days a week and proudly wears his monkey-shaped glasses which help him see.

For Daniel and Toby it took an army of health professionals, including doctors, speech pathologists, physiotherapists and occupational therapists to help restore the damaged pieces. But most of all, it took the undying love, patience and dedication of two extraordinary individuals.

Do you want to turn a vulnerable child or young person’s life around? Contact Challenge Community Services by emailing fostercare@challengecommunity.org.au for more information about becoming a foster carer.

Or download our free e-book Fostering for Permanency: Giving Children and Young People a Safe Home for Life.

CTA Foster Permanency 13

Author: Challenge Community Services

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About Challenge Community Services

60 years ago we were a small band of parents and friends seeking support services for our children with disabilities. Today, Challenge has grown to be one of the largest community support services in New South Wales. We provide support to over 2500 people from Albury to Lismore, Sydney, Dubbo, Tamworth and beyond. With over 600 staff, 85 of which have a disability, we strive to comply with and exceed all standards required under State and Federal Acts.
In the spirit of Reconciliation, Challenge Community Services acknowledges Aboriginal and Torres Strait Islander peoples as the Traditional Owners and Custodians of this country, and their connection to land, water and community. We pay our respect to them, their cultures and customs, and to Elders both past and present.
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