Operating from a former commercial premises on Grange road just outside the city centre SPACE have been supporting children with additional needs, and their families for 10 years.
The charity was founded in 2014 by Jemma Gregory:
“SPACE started because when my daughter Isobel was born, I found there was no support, nowhere to take her. She has mitochondrial disease and is quite severely disabled, we knew from birth that she would be severely disabled. She has epilepsy , she is tube fed and she’s in a wheelchair. We were told that she wouldn’t survive much past birth, she’s 14 now. I found there was a lack of support, there was nowhere we could go as a family that was accessible.
“I met some other parents and realised that we needed something. We gave ourself ten years, we always knew we needed our own place. The Lego stand ( in the old market) was our first fundraising support, then we did back packing and then we became a charity ten years ago which meant we could start applying for grants.”
Determined to support children and families in need, the charity ran play sessions in hired community rooms for over 4 years. After building up their funding they eventually found a unit to rent in 2018 and began the building work and renovation. This took 2 years, including knocking two separate buildings into one larger space. The impressive centre includes a large fully accessible, 2 storey play frame and soft play area, a sensory room and an activity and meeting room. It opened in Feb 2020, before having to quickly close due to the pandemic.
Jemma says “We are open 7 days a week and we run sessions every day. During the week we run sessions for under 5 year olds, for families who are on the start of their journey with their children with additional needs. There’s a lot of difficulty at that time, finding schools, making sure they are getting support in school, housing adaptions , and making sure that they don’t feel isolated like I did in the beginning . We do a home school group, for children that are home schooled. This is increasingly an issue , children don’t fit in school and school is not the right place for them. “
The centre is hired by local special schools in the afternoons, some using it for their PE provision. From Monday to Friday SPACE operate an after school club. “We are really proud of it because there isn’t really any others in the whole of the UK” says Jemma.
Comments Project Co-ordinator Liz : “Its time for our children to be independent! Its important for them to grow socially and to have time with friends. I’m a newcomer here just coming up to 12 months and when I work with the families its a privilege to help on that family’s journey
Having risen and built the charity from nothing, Jemma and the team now support around 600 families a year. “The majority are Chester and Ellesmere Port, some come from as far away as Anglesey and Stoke on Trent, just because there is nowhere else like us around. If families can’t access normal soft play or a park, they will travel just to have a couple of hours. “
SPACE is funded by a variety of sources but receives no council or Government money. “We rely on charitable funding” says Jemma. “The Steve Morgan Foundation is a big one, Lottery have been a huge support. Then its fundraising events and wherever we can get money from. This year is being called a “big squeeze” for charities. A lot of money went to charities after Covid, but now its just not there, we are seeing a lot of charities go. We need to keep our name out there. There are so many children with additional needs that we have a waiting list for most of our services. The problem we have is then we don’t want to shout about what we do because we don’t want to let people down and for people to feel that they can’t access us. By not shouting what we do, we don’t get that reach out and we have been here for ten years and people still don’t know we are here. Its a difficult balance.
“Word of mouth is our gift really. Having the peer support from other parents is very important, its a complicated system. There’s a lot of information that is not willingly given by education authorities and the local authority. It’s not freely available, so having a parent who is a few steps in front of you and to be a guiding hand is really important. To be able to facilitate that is an honour. ” Reflecting on the ten year journey Jemma describes the strength of her motivation:
“You meet parents who are absolutely broken , the motivation to help people and do something about it was huge. What people experienced during Covid, that isolation, is what families experience all of the time, not being able to get out, do things and experience things. When isolation hit people that were already isolated we had 2 choices. We could close and do nothing or we try and provide something. We went online and did groups, We sent out sensory packs to families so they could interact on screen . We did messy play, arts and craft, musical instruments. We wanted to makes sure that the support was there. We also got permission from the local authority to open up for one family at a time.”
Operations manager Lucy, who oversees the day to day running of the centre says “” It was a crazy time. We were putting bookings online at 5 in the morning, people were queuing for it. I think that showed what a big deal it was and how it was valued by families. “
Jemma hopes that the future will see more opportunities and services to support children with additional needs. “A big goal for SPACE would be if other organisations had the same awareness and accessibility. Communication, ramp access, staff understanding and tolerance of additional needs. The problems that I faced 10 years ago are the same today. Every week we get a new family and its the same story. My other daughter, Imogen was diagnosed with autism when she was 10. I knew that there was very little support, you get that autism diagnosis , you get a letter with a web link. That’s all the support you are given. A big change would be recognising that parents need that support. We get all different types of parents coming here, many don’t have the capability or access or time to find that support. I hear some really sad stories, they are drained and nobody has reached out to them.
“At the minute or main goal is to keep going and keep being here for families. We would love to go bigger and open more centres. Anyone can help us with our fundraising, we could also do with business and corporate support, even if its just a collection tin on the counter.”
Concludes Liz : ” We need lots more but now we need to grow our roots and make sure our foundations are firm. The miles that people come to travel to us almost makes me feel embarrassed that they haven’t got anything nearer. Parents say to us how glad they are that they have found us. They say it takes a village to raise a child and some of the children that come here they can’t find their village until they find us! ”
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