Grace's story

by Edd Shipton

Our five-year-old daughter, Grace, is severely short-sighted and profoundly deaf.  She also has cerebral palsy and is a wheelchair user. She was born prematurely and 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 and lost her hearing as a result.

Grace smiling with her dad

Her second birthday was spent in hospital having cochlear implants put in - we told her she got her ears for her birthday. After a shaky start they’re working well and have helped Grace to hear speech and environmental sounds.

We got referred to Sense two years ago to get advice for Grace’s speech and language therapy and her additional educational needs as we were starting to think of a suitable school for her.

Soon after that Grace got her assessment by the Children’s Specialist Services team at Sense who wanted to find out how she responds to sound and visual stimulation, the way she plays and eats, how she gets around and expresses herself. The assessment would help with getting the right health services and education provision for Grace.

I think that was the first time we heard that she had lots of ability and that she's only hindered by the physical aspects of her challenges. In order for her skills to be nurtured, we needed to find a way to communicate better with Grace. Her Children & Family Support Worker has shown us how to understand her subtle way of communicating – what her eye movements and finger taps mean.

Grace with her dad outside in their gardenNow Grace can communicate using a mixture of signs and sound. She loves school, messy play (anything messy!), swimming and playing with her older sisters. Sometimes people ask us if Grace is attending school just one day a week and they’re quite surprised when we tell them she goes to school full time.

Sense supports the school staff to understand deafblindness and to respond to Grace’s learning needs. Her intervenors will interpret things for her, they will sign and explain what's going on. They make sense of the world around her when sometimes it can be a bit confusing for her. Like when they’re about to go swimming and they give her an alligator and she knows that she’s going to the pool.

Now the challenge is to develop her skills and make sure she reaches her potential. Our strongest desire is to see her as independent as possible. And we know that with the right support she can achieve that.

So show your support for Deafblind Awareness Week this year. Spread the word about sight and hearing loss on social media using #DBAW2014, find out more about deafblindness, fundraise, donate, volunteer. Anything you do - no matter how small or big will make a huge difference to a deafblind child like Grace.  I’ve seen the results of your support; they’ve been invaluable to us as a family.

Related link

Deafblind Awareness Week 2014

 

First published: Thursday 26 June 2014
Updated: Tuesday 1 December 2015