- Area:
- Wales
- Programme:
- People and Places
- Release date:
- 11 5 2012
Working from Serennu, a purpose built children's centre in Newport, The Sparkle Appeal provides state of the art treatment and assessment facilities, information, and leisure activities for over a thousand children with complex and special needs in South Gwent.
The project is celebrating today after being awarded a grant of nearly £490,000 (£487,743) from the Big Lottery Fund’s People and Places programme to run the Sparkle Family, Support & Play Project. The project will do exactly what it says on the tin by providing a holistic support service to the families of children with severe and multiple disabilities, helping to meet their health, social and leisure needs across the counties of Newport, Monmouthshire and Torfaen. The project will ensure that children with complex disabilities can be better integrated into the community by improving their skills and helping them to enjoy play and activities with their siblings and other family members
One person who can vouch for the need of such a project in Gwent is Vanessa May from Newport.
Vanessa’s son, Daniel, now aged 10, was born with a complex abnormality of his spine (several half-vertebrae and ribs and vertebraemissing). Vanessa always knew he would need major spinal surgery by the time he was 2 years old, and from when he was 18 months of age, she began to worry about the operation, convincing herself he was going to die. Vanessa, a lawyer, refused to talk about nursery schools, couldn’t say the word “wheelchair” and noticed this was all beginning to encroach on her work and family life as well as affecting her relationship with her husband.
Vanessa lived and worked in London as a lawyer at the time and her special needs health visitor recommended she should see a counsellor for parents of special needs children. During the first couple of sessions, Vanessa just cried. The counsellor asked her to describe Daniel.
“He is 18 months, he has many things wrong with him, and he needs major spinal surgery,” she answered.
The counsellor stopped her in her tracks and asked her what colour hair he had, what colour eyes, what he likes, what he dislikes, what sort of temperament he has.
This made Vanessa stop and begin to re-define how she looked at Daniel and the person he was becoming, instead of looking at him and seeing his disability.
The year of counselling took Vanessa on a tour of self-discovery, realising how lucky she was to have Daniel and throughout this time she felt it liberating to off-load on someone who was not a friend or family and therefore not feel guilty about it. In hindsight she describes it almost as bereavement counselling:
“Everything you imagined having a baby was going to be like - it wasn’t,” says Vanessa.
“You had to start all over with new concepts.”
Vanessa is now involved in the Newport branch of the Parents for Change group, which meets every month at the Serennu Children’s Centre in Newport and offers parent support and campaigns for families and carers of disabled children and young people up to the age of 25.
She often welcomes parents to the group in whom she recognises signs of what she went through. She wishes they had the same service of counselling and support that she had in London and emphasises that “everything you do as a parent at that stage affects how you will be in the future.”
Vanessa describes the counselling service The Sparkle Appeal aim to provide as a “family support issue - to help and support the parent or carer who is having the crisis for the benefit of the entire family.”
From her own experience of this service, which has never been available in Newport, Vanessa says: “It made me the parent I am today. Who knows what sort of mother, wife, lawyer I would have been if I hadn’t had this vital support. It changed the way I looked at things. True I may have got there on my own eventually, but not then.”
Further Information
Big Lottery Fund Press Office – Ben Payne: 02920 678 224
Out of hours contact: 07500 951 707
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Public Enquiries Line: 0300 123 0735
Textphone: 0845 6021 659
Full details of the Big Lottery Fund programmes and grant awards are available on the website: www.biglotteryfund.org.uk
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