Grace with her dad EddFive-year-old, Grace Shipton, has severe sight loss and is profoundly deaf.  Grace also has cerebral palsy and is a wheelchair user.  This Deafblind Awareness Week (23-29 June), her father Edd Shipton wants to raise awareness of the challenges that deafblind children and their families often face and what they can achieve with the right support.

Edd, said:

“Grace was born prematurely with severe short-sightedness. At eight weeks old she’d already had heart surgery and part of her intestine removed. Soon after that we were told that she may have contracted meningitis when she was very little and lost her hearing as a result. On several occasions we didn’t think our little girl was going to make it.”

Her second birthday was spent in hospital having cochlear implants put in and shortly after that she could hear speech and environmental sounds. “We told her she got her ears for her birthday,” her dad said.

But despite the implants there still were many more challenges to overcome. Grace’s communication was very subtle – just eye movements and finger taps. In order for her skills to be nurtured, her family needed to find a way to communicate better with Grace.

“We got in touch with Sense, the national deafblind charity to get advice. I think that was the first time we heard that our daughter had lots of ability and that she’s only hindered by the physical aspects of her challenges,” Edd said.

With the support of specialist staff at Sense, Grace is learning how to communicate and her family is getting essential advice around social care, local authority services and education provision tailored to her needs.

Grace can now communicate using a mixture of signs and sound and she attends a special school full time. Sense supports the school staff to understand deafblindness and to respond to Grace’s learning needs.

“Sometimes people ask us if Grace attends school just one day a week and they’re quite surprised when we tell them she goes to school full time and that she loves it. That’s why Deafblind Awareness Week is so important to our family. Raising awareness of deafblindness means that children like Grace will be able to receive the right support to reach their full potential.”

For more information about Deafblind Awareness Week visit www.sense.org.uk/DBAW

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