It was a dream that is finally becoming a reality.
A charity’s vision of creating a respite centre for young people with severe disabilities – which feels like a holiday home – will help thousands of families across the south.
Construction is already under way on the sprawling complex next to Rachel Madocks School in Eagle Avenue, Cowplain, but Smile Support and Care, which is based in Southampton, is £500,000 short of the £3.4m needed to complete the build.
The charity has already managed to raise an incredible amount through grants and private donations.
The remaining amount will finish off the inside of the building with the very best equipment to make stays at the centre as comfortable and relaxing for young people and their families as possible.
Steven Clarke founded the charity 20 years-ago, inspired by his son Sebastian, who died in 2004 aged 14.
Mr Clarke said: ‘My son had a genetic disease and was diagnosed as terminal.
‘We needed a lot of respite care and, at the time, we found it quite challenging to co-ordinate between all the agencies.
‘I had a chat with Hampshire County Council and social services and they gave us a grant to start us off. At the time we had three carers and now there are over 100.
‘One of the privileges of Sebastian’s condition was we were in touch with children’s hospices.
‘The first one we went to was Helen House, in Oxford – the very first children’s hospice in the world.
‘We really liked the model and we felt we could provide similar care for families who have very long-term needs.
‘Our respite centre will have apartments where families can come and stay.
‘The children get looked after and the rest of the family can go out and enjoy the countryside or just explore.
‘The children will also have a great time.
‘It is the realisation of a long-held dream.’
Many families become exhausted with the unremitting nature of caring for a child with a complex, and potentially life-limiting, disability.
Stuart Baldwin, chief executive of Smile, said: ‘The commitment to building this centre is in recognition of the fact that respite is the service most often requested by family care givers, yet it is in critically short supply.’
Sometimes parents feel a natural guilt or reluctance to relinquish their caring responsibility but Smile aims to empower them to acknowledge that through effective respite care they themselves can be rejuvenated.
Short breaks benefit the parents and child which makes a big difference by reducing stress, enabling them to have a rest from the demands of caring, and time to carry out activities of their choice.
The centre will make the world of difference to families in the area.
It will accommodate two apartments, plus eight specially equipped bedrooms with en suite bathrooms where children and young adults with severe disabilities can stay either with their families or carers.
Stays can range from overnight to a full week’s holiday.
All rooms will be specially adapted to provide the highest specification fixtures and fittings appropriate to the needs of the young people whilst retaining a hotel-like feel. There will be drop-in facilities for disabled young adults who otherwise may have nowhere else to meet and socialise.
The grounds will be landscaped with a specially planted garden to encourage sensory stimulation.
Work is well underway and the centre should be ready by spring next year.
Go to smilesupport.org.uk
CENTRE WILL BENEFIT SO MANY FAMILIES
LOUISE Bush, a 30-year-old toymaker from Southsea, said for parents like her respite is vital.
She is mum to eight-year-old Joel who has severe autism. At the moment she gets two nights respite a month.
She said: ‘Joel is more like a baby. He is still in nappies and requires constant supervision. He can’t communicate at all, verbally or by signing.
‘He doesn’t have any awareness of danger. If we want to go out for the day it requires military planning.
‘Because of the severity of his autism and because he can’t communicate he is very prone to getting anxious and angry and sometimes he is violent.
‘Joel can’t read or write but he can run about and people don’t think of him as disabled. In the past he has managed to climb out of the window. It’s a constant battle to be one step ahead of him all the time.’
As Joel, a pupil at the Mary Rose School, gets bigger and stronger it sometimes take both Louise and her partner Joshua Knill to change his nappies.
Louise has joined a gym to build up her own strength.
‘Both me and my partner are self-employed. If one of us is at work full-time the other would not be able to cope. The respite we do get is fine but we would like more.
‘We have got friends with children who are similar and they aren’t getting any respite.
‘To have somewhere where we could go as a family and almost have a bit of a holiday with your children would be a benefit to so many people.
‘A lot of parents don’t even get to have a family holiday. We have not been on holiday for two years but we are going to try this year.
‘But it’s not like a holiday because you are constantly making sure that Joel is okay and looking after him.
‘We are fortunate that my parents have a property in Spain as we couldn’t just go to a normal hotel.
‘The new respite centre will be a huge benefit to families like ours.’
The centre is next to Rachel Madocks School, in Cowplain which teaches pupils aged two to 19 years-old with severe, profound and multiple learning difficulties.
Headteacher Jackie Sumner said: ‘It will be exciting to see the land next door being transformed. It will also be great for us to have some new neighbours who have so much in common with us.’
There are a number of opportunities to help fund the build.
Supporters can sponsor the charity by naming everything from benches to bedrooms.
Names will go on a wall of honour in reception.
There are also places left to take part in the Great South Run, in October.
On September 1 there is a sky dive taking place at Old Sarem, in Salisbury – a first for the charity.
Why not organise your own fundraising event? Donations of any size are welcome.
To find out more about fundraising go to smilesupport.org.uk or call (023) 8061 6215.