Why these children are downright special

SPECIAL: Hull charity Downright Special

A Bransholme-based charity is making a huge difference to the lives of people with Down Syndrome and their families. Rick Lyon paid them a visit.

When Gillian Bowlas’ daughter Rachel was born with Down Syndrome, the new mum was given an out of date, badly photocopied leaflet about the condition.

She was told her baby girl would be extremely passive and probably wouldn’t walk or talk.

Fast-forward nearly 15 years and Rachel is thriving at secondary school, is very much her two brothers’ annoying teenage sister and, according to Gillian, “never stops talking”.

“It was all very negative when Rachel was born,” says Gillian. “What we were told was not true at all.”

She met another mum while they were learning to use Makaton sign language to help their children’s development and she’d endured a similar experience.

They organised support meetings for other parents of children with Down Syndrome and soon realised the lack of support and understanding out there.

From there, the Downright Special charity was born and it has been going strong since June 2007.

Now, not only does it provide development and play sessions for children with Down Syndrome, as well as support for parents, it delivers training in mainstream schools in order that teachers are able to help maximise the potential of the children.

Gillian, who is now the charity manager, says: “We very quickly grew from just being a singing and signing group, with coffee for parents, to very organised sessions where we do speech and language interventions for children with Down Syndrome.

“It grew through networking and getting to know other families, and more and more families started to get involved.

“We know that children with Down Syndrome do better in mainstream school, not special school, but that only works if the schools know what they are doing, and there is no specialist teacher in schools for pupils with Down Syndrome in either of our local authorities.

“So we realised that what was actually needed for those children to be successful in school was specialist teachers who could support them. At that point we started to recruit specialist teachers.

“We have three part-time teachers who deliver some of the group sessions that we deliver on a Friday. But in additional to that, they do outreach sessions in schools, so they will go and visit children in schools. They will give advice on how to differentiate the curriculum and we make bespoke resources for them to take in, for them to work on and help with inclusion.”

This crucial work takes place throughout Hull and the East Riding of Yorkshire, with some support also offered on the South Bank, and is overseen by a board of six trustees.

SUPPORT: Downright Special is there for people with Down Syndrome and their families

Downright Special has six part-time paid members of staff and 15 regular volunteers. It doesn’t receive any local authority funding and is instead entirely reliant on securing grants and community fundraising.

The work they do is, says Gillian, absolutely vital in order that parents of children with Down Syndrome are given all the correct information and support, even before their baby is born.

“The work that we do is really broad ranging, across all aspects of the care and education of people with Down Syndrome”, she says. “We give a lot of support to parents, so we work closely with the hospitals. We have new parent packs that sit on the wards. For myself and a lot of the other parents whose children are a little bit older now, we all had really bad experiences when our children were born, including how we were told the news.”

On her own experience with Rachel, Gillian adds: “She’s at mainstream secondary school now and doing very, very well. She is nearly 15 and we’ve learned more from her than she’s ever learned from us.

“She has an older brother and a younger brother and she is very much part of the family. They just see her as their annoying sister.

“I’m really passionate that no-one else has to go through what I did when she was born, so we have these new parent packs that sit on the wards.

“We’ve got really good connections at the antenatal screening unit and the maternity wards so that and other organisations that can offer support.

“We’ve also got a new parent co-ordinator, who will go and visit in hospital as soon as the baby is born, and we can also support throughout pregnancy.

“That’s all right at the start and that is usually how we find out about families because the hospital will tell us, with the parents’ permission.”

Parents are invited to attend the Downright Special’s Friday morning sessions at its Bodmin Road Church Office base, on Padstow Close, Bransholme.

“These are the cornerstone of what we do – when all the parents get together,” says Gillian. “We have up to 20 kids here. The babies will be doing a lot of sensory activities, beginning to learn to sign, and there is a lot of support for parents in those scary early days.

“We have a little dance session for the children for the by a dance teacher who gets them all woken up and gets their body parts moving. We split the kids up into small groups and that’s when we do our speech and language intervention, so we are working on their communication, numeracy, literacy, all those key skills that they will need for going to school.

“All the children who leave here to go to school know their alphabet and their phonic sounds and they are counting to 10. You’d be amazed at what these kids can achieve when the right interventions are in place.

“Then at the end of the day we all get together again and do a singing and signing session, working on those skills in a really fun way. We give parents lots of resources to take home so they can continue working with their children at home. For the families who do that, the kids do even better.”

Although attitudes have improved in recent years, Gillian says there are still many misconceptions around Down Syndrome, which is something the charity is constantly battling against.

OUTREACH SERVICE: Downright Special in Bransholme

“A lot of what we do is about explaining that and letting people know the potential of these people,” she says. “It is a big challenge and I think it starts from the moment of finding out you are pregnant because you are bombarded with information about screening. Nobody ever gets screening for things that are positive, so you are immediately on the back foot in terms of the language that is used.

“We do a lot of work with the antenatal screening unit about making sure people are making an informed choice and they are using language that is appropriate and not leading people down a path unintentionally. For example, we now don’t talk about the ‘risk’ of having a baby with Down Syndrome, we talk about the ‘chance’ of having a baby with Down Syndrome. At those really important early stages, language is crucial.

“We aren’t trying to say everything will always be rosy, because it is more challenging having someone with Down Syndrome and we have bad days, but any parent you talk to will say the good days outweigh the bad days and none of us would be without our kids whatsoever. They all bring something to the world that other people don’t.”

As well as the Friday morning sessions for babies and young children and their parents, Downright Special hold afternoon sessions for school-age children. The children at these sessions attend alongside their teaching assistant from school.

“That’s about not just working with the kids but working with the teaching assistants and them developing the skills and the knowledge about how to deliver these activities in the classroom. That works a treat, it really does,” explains Gillian.

The next stage in the charity’s ongoing development is to provide young adults with Down Syndrome similar levels of support given to the young children and teenagers. This has been identified as a crucial issue for the charity to address, alongside partner organisations.

“When we set out the focus was pre-school children and then we realised it also had to be children who were going to school because the schools didn’t really know what they were doing,” says Gillian.

“Now we’ve got more of our children going into mainstream secondary schools, which we didn’t have before, and that is because of the work we have done. But what we’ve also realised is that there seems to be a bit of a gap in the understanding and knowledge when they leave school.

“We set them off in this very high trajectory of expectations in terms of what they can achieve, and then they fall off a cliff at 18. So we have been leading a working party involving the Humber LEP (Local Enterprise Partnership), the DWP (Department for Work and Pensions), local colleges and the local authorities in looking at what is out there and what the gaps are for people with Down Syndrome – and therefore what can Downright Special do to fill those gaps.

“Those kids that we began supporting in 2007 are now getting to that age and we can see that we are going to need to continue doing something to support them.

They are all ‘downright special’, which is why this unique charity will always be there for them.