Down’s Syndrome North East celebrates 10 years of progress this year. Alison Goulding reports.
WHEN Ken and Joan Moore’s daughter was born with Down’s Syndrome, they were advised to take her home, love her, and never expect her to progress out of nappies.
They decided to ignore the last part of the advice, and today Catherine has the rich and varied life of any other 36-year-old.
She has a job, many good friends, lives in supported accommodation in Herrington and enjoys frequent bowling and cinema trips.
When she was a few months old, the Moores joined Down’s Syndrome North East and together with the other parents, began pioneering a new way forward for children with the condition.
“We joined the charity when Catherine was very young so she’s grown up with the other children,” said Ken.
“We describe ourselves as pioneers because we’ve discovered all sorts of techniques from America relating to education and health.
“As a group we still look for new ideas.
“We have to remember that the local authority doesn’t have unlimited funds but we do battle to remind them that some need more than others.”
Joan added: “At one time people with Down’s Syndrome weren’t educated because people didn’t think it was possible.
“We had to fight for many things that are common now.
“It’s the same with any disability.”
On Saturday, May 11, Down’s Syndrome North East will celebrate its 10th anniversary as an independent group with a big party at the Stadium of Light.
The charity began more than 40 years ago with the support of the Down’s Syndrome Association.
It has become the leading organisation for the help and support of all people with Down’s Syndrome and their families and friends and covers Northumberland, Tyneside, Wearside, Durham and Teesside.
It has 450 members and is run entirely by parent volunteers. Circle of Friends is its group for members aged 18 and over.
Ken said: “The first couple of hours will be for younger families and then a group from the Circle of Friends will be welcoming people and serving drinks and selling raffle tickets.
“One of the aims is to show younger families how much the Circle of Friends have fulfilled their own potential over the years to give them a lot of encouragement.
“We have various people in the group who are happy to speak to new parents.
“There will also be videos and displays to see. Catherine takes a dance class once a week with TIN Arts in Durham and a film of their recent performance at the Gala Theatre will be on show.
“TIN arts do dance, photography and art sessions for them and their work will also be on show at Durham County Hall on June 4.”
Joan and Ken were quick to take action when they found out Catherine had Down’s Syndrome.
Joan said: “When she was first born no one said she had Down’s Syndrome but I wondered.
“She was discharged with an appointment about the clicky hip they said she had.
“They’d lost her pre-natal card and when it arrived in the post it had Down’s Syndrome written on it.
“We didn’t know what it was but we quickly found out and began doing physical work with her to strengthen her body.
“At that time doctors didn’t always tell parents but the first two years are a very important time for development.”
Joan and Ken feel things have improved since then.
Ken said: “Now parents are told straight away.
“Back then, professionals thought you shouldn’t know or ask too many questions.
“At first we didn’t feel we were getting anywhere with the paediatrician but when we questioned what was going on the barrier went up.
“He told us to take her home and love her, that she’d never be out of nappies but she’d love music.
“He did us a favour really because it made us determined.
“My sister’s son, Barry, has Down’s Syndrome, so we had a chat with her and she told us what to expect.”
Catherine is the youngest’s of Ken and Joan’s children.
Joan said: “Our sons Andrew and Martin asked what they should do and we explained that they should just treat her as any other little girl.”
The Moores also believe that the wider public have become more aware and educated about Down’s Syndrome.
Ken said: “When they go bowling people do stare – it’s clearly admiration and acceptance. They are a great example to the other groups.
“People know more about Down’s Syndrome now and are more accepting. I think it is harder for people who have a mental disability that doesn’t have a physical sign.
“We never once thought about not taking Catherine with us everywhere we went – but before that people were reluctant.
“They weren’t sure of the reaction. We’ve always encouraged her to use public transport too.”
Catherine attended Glebe Primary school, Davenport Special School, Fellstead School and later, Sunderland College, where she studied for English speaking exams.
Ken said: “I saw a university programme in which people with Down’s Syndrome were educated in mainstream schools.
“We didn’t know if it was possible so we wanted to try and arranged for Catherine to go to Houghton Kepier one day a week.
“The deputy head said the pupils got as much out of the experience as Catherine did.”
“Her first paid job was at Gap in The Bridges working in customer service.”
Catherine said: “I liked it there, I got compliments. I greeted customers and did the fitting rooms.”
Catherine has worked at Chester Grove Garden Centre for the past six years where she washes dishes and clears tables in the cafe. She also volunteers at a church toddler group and works in the Children’s Society charity shop.
Like Catherine, many of the Circle of Friends are active volunteers in the community in care homes and charity shops.
Every November, they take part in the Durham Rotary Club Swimathon to raise money for local charities.
So far they have raised £2,000.
Ken added: “Life is fun whether doing something for yourself or for others.
“We’ve learned a lot by sharing experiences with other families. Because we have one thing in common we can give each other confidence and know things that are worth trying.
“We’ve been up to the Calvert Trust, in Kielder, who do outdoor activities for people with special needs.
“Seeing the sort of thing they get people achieving made us realise that nothing is impossible until it’s been tried and failed.
“Catherine went out on the water and did climbing and abseiling – it gave them a lot of confidence.
“Our children feed off each other. They encourage, criticise and have a great laugh.”
Every year there is a New Year’s Eve party for the group at the Racquet Club.
Ken said: “The staff have said that everyone should spend a day with someone with Down’s Syndrome. They fight over who gets to do their party. They say it’s the only party where people start dancing from the first song.”
Catherine now gets a small amount of money from the Council’s Direct Payments scheme.
Joan said: “It improves independence. Catherine can use hers to fund a personal assistant, Anna, who she can go to the cinema with.
“People in their 20s and 30s don’t want to be with their parents all the time so it gives her some freedom.”
Catherine said: “We have lots of fun playing air hockey. She’s really good, she makes me laugh.”
To find out more go to dsne.homestead.com