How Harry’s support circle allow him to shine

How Harry’s support circle allow him to shine
Posted on Fri 21 Feb 2020

Written by Tina Wild

 

Eight-year-old Harry has a cheeky streak. He loves music, dancing, parties and shopping. He also has CP spastic quadriplegia level 5, gets around in a wheelchair, and is non-verbal.

Three years ago, Harry and his family moved from the UK to Sydney, Australia, for a better quality of life. Although the move was pretty daunting, Harry’s mum, Maddy, has no regrets.

“I came here specifically to give Harry the life he deserves and we haven't been disappointed. Rather, my expectations have been exceeded by both the NDIS and CPA. His life here in Australia is enriched by an incredible circle of support, enabling him to live life to the full every day,” says Maddy.

 

Harry’s goals

Harry’s needs are complex, so maintaining his comfort and safety requires a team of dedicated experts. Harry’s circle of support includes his mum, Maddy, dad and carer, Karan, as well as CPA speech pathologists, physiotherapists and occupational therapists, and his school. Everyone works together to understand Harry’s wants and needs so they can set short- and long-term goals that will support him to reach his full potential.

To ensure all his carers are on the same page and kept updated on developments, Harry’s speech pathologist created a communication book. This tool outlines how Harry communicates, what this might mean and how others should respond to him. This helps new people in Harry’s life to get to know him quickly and easily, while Karan commented that the document is also invaluable for reporting to NDIS when applying for funding.

Therapists support Harry to develop his motor skills and cognition which improve his ability to feed, move, communicate, enjoy activities and continue to learn new skills, such as making full use of Assistive Technology. But more than anything, Harry’s carer and mum want him to be happy and enjoy a good quality of life. This means ensuring he continues to see his family regularly, makes new friends, and participates in hobbies and in the community.

Here’s how Harry is progressing towards achieving these goals.

 

Harry’s progress

Harry is tenacious and sociable. He adapts well to new situations, and is thriving on the new experiences and challenges that life in Australia brings. He’s made new friends, and his care team is incredibly impressed with how far he’s come since he’s been seeing therapists at CPA.

Getting Harry’s first NDIS plan was momentous for his mum. The NDIS system was so unfamiliar to Maddy after moving from the UK, but CPA’s knowledge and support really helped her navigate through the process.

Funding from this plan has enabled Harry to make great progress with his occupational therapist using Assistive Technology to aid communication. After trialling different types of switches, switch toys and switch apps for the iPad, Harry now understands cause and effect between activating a switch to make something happen on a screen. He is also starting to switch scan, which is making choices for items on a screen by scanning through them using his switch. As a result, his communication clarity has improved dramatically, and he is more easily understood by those who care for him. Harry is also able to make clear choices about activities that he enjoys…or doesn’t enjoy!

Thanks to special feeding equipment and therapy, Harry’s feeding has also improved. His equipment is constantly monitored and his whole care team – at home and school – have been trained how to transfer him in and out of equipment.

Harry’s carer and his mum find that observing and being involved in therapy sessions helps them to learn about Harry’s capabilities, and empowers them to continue his therapy at home.

“He loves music therapy and hydrotherapy and looks forward to these sessions each week.

He also loves all his therapists and responds to them so well. They notice things I might have missed and he really gets that they understand him,” say Karan.

 

As Harry’s story demonstrates, it’s never too late to implement neuroplastic interventions. Download this guide to finding the right provider or contact CPA to discover how our expertise can make a difference to you, your child and family.

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